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Lupus Foundation of America News and Stories https://www.lupus.org/ en Copyright 2018 2018-09-18T18:16:31+00:00 President George W. Bush Attends Medicare Part D 15th Anniversary Summit https://www.lupus.org/general-news/entry/president-george-w.-bush-attends-medicare-part-d-15th-anniversary-summit https://www.lupus.org/general-news/entry/president-george-w.-bush-attends-medicare-part-d-15th-anniversary-summit Event Hosted by MAPRx, a Coalition of Patient Advocate Groups Convened by the Lupus Foundation of America.

Today, George W. Bush, 43rd President of the United States, spoke at a summit celebrating the 15th anniversary of Medicare Part D. The event was hosted by MAPRx – a coalition convened by the Lupus Foundation of America (LFA) consisting of more than 55 patient, family caregiver and health professional organizations committed to strengthening and protecting Medicare Part D.

“Adding a drug benefit to Medicare based on competitive principles was one of my Administration’s signature achievements,” President Bush said. “Medicare Part D continues to play an important role for millions of Americans who rely on it to get medications they need at an affordable cost. I was pleased to take part in today’s summit celebrating the program’s 15th anniversary.”

“President Bush played a leading role in the inception, passage, and implementation of Medicare Part D,” said Sandra C. Raymond, CEO of the Lupus Foundation of America. “As a result of his vision and leadership, this essential program continues to improve the lives of millions of Americans every day. We are grateful for the President’s insights into what it took to develop and pass this monumental achievement.”

Enacted in 2003, Medicare Part D provides access to prescription drug coverage for America’s seniors and people with disabilities, including those who suffer from rare or chronic diseases. Today, more than 43 million Medicare recipients – nearly one in eight Americans – benefit from this bipartisan achievement.

MAPRx convened policymakers, health care experts, and patient advocates to participate in the half-day event on September 18 in Washington, D.C. to discuss current challenges facing this critical program and how to strengthen it to help protect current and future beneficiaries.

About MAPRx

MAPRx is a coalition convened by the Lupus Foundation of America consisting of more than 55 patient, family caregiver, and health professional organizations committed to strengthening and protecting Medicare Part D. Learn more about MAPRx.

Highlights of the Medicare Part D 15th Anniversary Summit https://www.lupus.org/general-news/entry/highlights-of-the-medicare-part-d-15th-anniversary-summit https://www.lupus.org/general-news/entry/highlights-of-the-medicare-part-d-15th-anniversary-summit Foundation President, Stevan W. Gibson and former President George W. Bush

Medicare Access for Patients Rx (MAPRx), a coalition of over 55 patient advocacy organizations, today hosted a summit to celebrate the 15th anniversary of Medicare Part D. The event included panel discussions featuring policymakers, health care thought leaders, and patient advocates. The conversation focused on current challenges facing the program and ways to help strengthen it for current and future beneficiaries. The panels were moderated by renowned journalist Cokie Roberts.

“This historic summit brought together some of America’s leading health care experts and policymakers,” said Sandra C. Raymond, CEO of the Lupus Foundation of America (LFA). “On behalf of the LFA, and MAPRx and its more than 55 member organizations, I want to thank all of our panelists for lending their voices in support of Medicare Part D and the 43 million Americans who rely on it. I am confident that by working together we can protect and strengthen this critical program for many years to come.”

The day opened with a discussion between two current officials from the U.S. Department of Health and Human Services (HHS). Dan Best, Senior Advisor to the Secretary for Drug Pricing Reform, and John O'Brien, Advisor to the Secretary and Deputy Assistant Secretary for Health Policy, shared the administration’s perspective on Part D, including their efforts to implement the recently released American Patients First blueprint to lower drug prices and reduce out-of-pocket (OOP) costs. View a recording of their remarks.

Following their remarks, leading patient advocates spoke about the importance of Part D for America’s seniors and those living with serious and chronic conditions. Panelists from The AIDS Institute, National Council on Aging, National Alliance on Mental Illness, and American Cancer Society Cancer Action Network recalled the lack of access to prescription drugs prior to the passage of Part D and spoke about the success of the benefit in providing lifesaving therapies for the populations they represent. Panelists also referenced the report produced by the MAPRx Coalition: Fifteen Years of Part D: Gaining Perspective on the Medicare Prescription Drug Benefit. This report highlighted the success of Part D and the challenges faced by patients, including no limits on OOP costs, the use of specialty tiers, and the impending OOP cliff that
could raise beneficiaries spending by $1,250 in 2020. Click here to view a recording of this panel.

The next panel featured three of the leading voices in the crafting and implementation of the original legislation creating the Part D benefit: Joel White, Liz Fowler, and Dean Rosen. They discussed the motivation of the administration and Congress to create a prescription drug benefit, as well as the compromises that were made to pass the legislation in a bipartisan manner. The panelists also shared their perspectives on the success of the program and ways it can be improved. View a recording of this panel.

Finally, the audience heard from two speakers who were directly responsible for administering Part D under two different administrations: Jon Blum, former Director, Center for Medicare, CMS (2009-2014), and Tom Scully, former Administrator, CMS (2001-2004). Mr. Blum and Scully gave their perspectives on the evolution of the program over the years, as well as their views on the challenges and opportunities that lie ahead. View a recording of their remarks.

The featured guest at the event was George W. Bush, 43rd President of the United States.

Watch a full recording of the panel discussions.

About MAPRx

MAPRx is a coalition convened by the Lupus Foundation of America consisting of more than 55 patient, family caregiver, and health professional organizations committed to strengthening and protecting Medicare Part D. Learn more about MAPRx.

Wills Robinson: Running for a Reason https://www.lupus.org/blog/entry/wills-robinson-running-for-a-reason https://www.lupus.org/blog/entry/wills-robinson-running-for-a-reason This profile is part of a series highlighting people who are participating in the Team Make Your Mark program. Keep an eye out for our upcoming Spring and Fall events or join the Choose Your Own Race team to run or walk in any race or distance you prefer. For more information, please visit www.lupus.org/teammakeyourmark.

Wills and Aiden met four years ago when he moved to the United States from England. “Before I met Aiden, I hadn’t heard of lupus,” shared Wills.

Aiden was upfront with Wills about what lupus is and how it affects her – from her symptoms, to doctor’s appointments and hospital stays. “The thing about Aiden is, you would never know she’s sick. If you met her, you wouldn’t know anything is wrong – she’s strong and doesn’t want anybody to worry about her.”

Since being diagnosed with lupus at age 11, Aiden has been an active advocate and voice for people living with the disease. She’s marched on Capitol Hill to educate her representatives about lupus, raised over $20,000 for the Foundation and has been involved in several other awareness related initiatives.

After doing his own research about lupus and educating himself about the disease, learning what Aiden has done to advocate and raise awareness, and supporting her in any way he could, Wills decided to do something more.

“I ran the New York half marathon in March for Aiden. Initially I didn’t tell anybody I was doing it and I didn’t fundraise until after the fact – I wanted to make sure I could finish the race!” shared Wills. “Now I’m training and fundraising with Team Make Your Mark for the Philadelphia half marathon.”

When asked about what Wills’ Team Make Your Mark participation means to her, Aiden shared “It takes a special kind of person to understand and be a partner of someone with lupus. It’s really amazing how Wills has realized how important lupus awareness is to me and that it’s become really important to him.”

Wills says that training and fundraising for a half marathon for such an important cause has been so motivating, even when training gets tough. It’s something that he’ll never regret doing, and to us it sounds like there may be more half marathons with Team Make Your Mark in Wills’ future!

Six Young Scientists Receive Award to Build the Next Generation of Lupus Researchers https://www.lupus.org/research-news/entry/six-young-scientists-receive-award-to-build-the-next-generation-of-lupus-re https://www.lupus.org/research-news/entry/six-young-scientists-receive-award-to-build-the-next-generation-of-lupus-re Today, the Lupus Foundation of America announced six recipients of its 2018 Gina M. Finzi Memorial Student Summer Fellowship Program designed to cultivate a life-long interest in lupus research in young scientists and build the next generation of researchers. The six awardees exemplify the Foundation’s comprehensive approach to lupus research as they work on important studies on a wide range of topics including: quality of life, assessing the risk of heart disease, advanced drug delivery technologies, and innovative support systems.

The Finzi Fellowship Award program was established in 1984 to honor Gina M. Finzi, the late daughter of former Lupus Foundation of America president emeritus Sergio Finzi, Ph.D. The fellowship has supported nearly 200 students who have gone on to further success producing several publications in peer-reviewed journals, including Lupus, Arthritis and Rheumatism and European Journal of Immunology.

“Our goal of the Gina M. Finzi Memorial Student Fellowship Program is to ensure we are cultivating an interest in lupus research with young scientists from the start – when they are pursuing their education, creating an important stepping stone for their future endeavors in lupus research,” said Stevan W. Gibson, President, Lupus Foundation of America. “We tackle lupus from every direction, and our Finzi awardees represent this approach as their projects encompass a multitude of scientific areas – especially in critical areas where more work and researchers are needed.”

Mentors also play a critical role in the success of awardees. Each individual investigator is sponsored, supervised, and mentored by an established lupus investigator. This relationship fosters a lifelong connection to the lupus research community and ensures the student has excellent resources to conduct their research.

“The Gina M. Finzi Memorial Student Summer Fellowship Program has been fundamental in fostering an interest in lupus research among younger generations of scientists, both at the institution I work at and across North America,” said Zahi Touma, MD, PhD, FACP, FACR, Assistant Professor of Medicine at the University of Toronto and mentor for two 2018 Finzi awardees. “Without the Lupus Foundation of America’s funding, we would not be able to support two of our most recent summer projects focused on critical areas of lupus research that need more attention – patient reported outcomes and quality of life, as well as cardiovascular risk tools in lupus.”

This year’s Gina M. Finzi Memorial Student Summer Fellowship awardees are:
Marilyn Allen 
University of Maryland, Baltimore County
Study Title: Nanoparticle Encapsulated Antimalarial Drugs for Improved Lupus Nephritis Treatment
Mentor: Dr. Gregory L. Szeto

Alanna Hirz
The Regents of the University of California
Study Title: Measuring Resilience as a Key Psychosocial Indicator for Women with Systemic Lupus Erythematosus
Mentor: Dr. Perry Nicassio, PhD

Mitra Moazzami
University Health Network/University of Toronto
Study Title: Validity and Reliability of Patient Reported Outcomes Measurement Information System (PROMIS) Computerized Adaptive Tests (CAT) in Systemic Lupus Erythematosus
Mentor: Dr. Zahi Touma

Rachel Nelson
Yale School of Medicine
Study Title: Modulation of Antiphospholipid Antibody-induced Trophoblast Inflammatory Response by Infectious Components
Mentor: Dr. Vikki M. Abrahams

Jennifer Ra
Washington University School of Medicine
Study Title: Virtual Support: the key to bringing social support into the home
for patients with SLE
Mentor: Alfred H. Kim, M.D., Ph.D

Jagan Sivakumaran
University Health Network/ University of Toronto
Study Title: Assessment of the QRISK3, SLE Cardiovascular Risk Equation, Modified Framingham and Framingham risk calculators as predictors for development of atherosclerotic cardiovascular disease in patients with systemic lupus erythematosus
Mentor: Dr. Zahi Touma

To learn more about the 2018 Gina Finzi Memorial Student Summer Fellowship award recipients, click here.

Walking for Herself and for Every Person Fighting https://www.lupus.org/blog/entry/walking-for-herself-and-for-every-person-fighting https://www.lupus.org/blog/entry/walking-for-herself-and-for-every-person-fighting Jackie Brown, second from left, with her daughters.

Jackie Brown knows lupus. She’s been coping with it for the past 27 years. But the diagnosis came as a complete surprise.

“I was in the hospital for two weeks with a bad kidney infection,” she recalls. “The doctor had given me antibiotics and I ended up having an allergic reaction. I was in the middle of my youngest daughter’s second-year birthday party when I got extremely ill.”

After being diagnosed with lupus Jackie remained hospitalized. “I asked my husband to bring me everything written regarding lupus,” she says, “so that I could understand this disease and what symptoms I was going to incur.”

Over the years those symptoms have included impaired vision, migraine headaches, severe inflammation and pain in her arms and legs, kidney issues, skin discoloration, rashes and bruising. Today she’s experiencing side effects from taking a corticosteroid to manage lupus for so long: high blood pressure, fragile skin, insomnia, a decrease in bone density, and cataracts.

Yet all along the journey, Jackie has faced each day with gladness. “Every day is a gift, a blessing from God. I’m extremely grateful!”

Part of that gratitude is paid forward. When she meets someone who’s newly diagnosed, she sends a ‘WE CARE’ package filled with facts regarding lupus, the Lupus Foundation of America website address, and little gifts, like a lupus wristband, pin, or key chain. “I want them to know they are not alone in this fight,” she says.

Five years ago, Jackie’s three daughters signed up the family for the Walk To End Lupus Now® in Los Angeles. That was the start of Team JB’s Sweetpeas. “It was my Mothers’ Day gift from my girls. I was so overcome with emotions that I cried—and then my husband donated the first $100!”

She says that team members use a variety of fundraising strategies, such as hosting Launch Luncheons to get everyone pumped up and ready to fundraise. Last year they created bracelets for sale; they also ask each donor to tell five other people about the Walk and the team’s fundraising page. “Bringing awareness is the key! That is our Team mission and goal with our fundraising.”

As for the day of the Walk— “It’s such an indescribable feeling!” Jackie says. “I walk for those like myself, every single person living with lupus and fighting daily. I walk for those unable to walk themselves. I walk to honor and in the memory of those who lost their fight. Talking to others participating in the Walk, hearing their stories and their journey and how the Foundation has been there for them and their family, is something truly magical, and I look forward to being a part of it each year.”

Be Powerful this Fall and sign up for a Walk to End Lupus Now® event in your area.

Staying on Top of a Busy Schedule https://www.lupus.org/blog/entry/staying-on-top-of-a-busy-schedule https://www.lupus.org/blog/entry/staying-on-top-of-a-busy-schedule The Sharing the Journey series is by people like you and for you. In their own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.

This month, we asked Sharing the Journey participants the following question:

What successful adjustments have you made to stay on top of your busy schedule, whether you’re balancing school or work?

Since I have two young children and work, managing a busy schedule is so important. I keep a couple of different calendars to keep me organized so I don’t forget anything. On the days I’m off and the kids are at school, I make sure I get a nap in before they get home. This way I have energy to make it the rest of the day. If I am feeling really bad, I rely on family and friends to help out in those times. It’s always helpful to have good support system. Roxi

Some successful adjustments I've made to balance a busy schedule when I had joint pain and/or fatigue was I made sure I ate a little different that day or took it easy. A lot of times you know when you’re going to have one of those days, so I make sure to pack extra snacks to keep myself going, and I always have something to help with my joint pain. Also, time your day to where you have time in between to rest, even if it's just for five minutes.Kayla J.

The start of school hits me like a freight train. Within only a few days, I am exhausted emotionally, mentally, and especially physically. Balancing work, sleep, school, and friends is a seemingly impossible task, but I have developed some strategies to cope with it all. First, I make sure to give myself one fun thing to do every day. Whether that's dinner with a friend or just talking to my mom on the phone, forcing myself to take time away from the madness helps me to emotionally recharge amidst the chaos. Second, I plan my coming week on the Saturday before it begins. This includes designating times to complete different assignments, scheduling events with friends, and setting aside time to get housework done. Undoubtedly, my plan changes as the days pass, but at least having a general outline before I jump into the coming week gives me great peace of mind and hope that I can get everything completed. Third, I choose when to work and plan strategically. On the days that I have lots of meetings and rehearsals scheduled, I try to decrease the amount of homework I do, (because when I get home I have very little energy to complete any school-related tasks). On the flip side, if I really need to get work done, I've learned to say no to social activities so I can direct all my limited physical energy into my studies. Though I still get tired often, I have learned to manage my schedule in a way that allows me the flexibility to listen to my body when I really need to rest. Becca

Planning! I keep a planner so I know what needs to be done and when so that I can reserve my (energy)Kayla B.

I am a full-time student, and I work full-time, so I feel like I am always stressed out and really busy. To balance both, I try to stay on top of everything and try to get things done early. I also recommend completing the harder tasks first so you have the easy things to complete last and you won’t feel so behind!Kyra

One of my big adjustments I’ve made is preparing my clothes the day before an appointment. I find that getting up and trying to do it on the same day is really hard. It’s time consuming and it becomes a problem to wait until the last minute. It makes life so much easier by making this small adjustment. Another major adjustment for me is making sure I have my pills out in my pill box with the days of the week labeled. I also make sure that the night before, I have put them in my purse. I make certain the count is correct. If I don't do this, I will forget. I notice also I must write things down, such as telephone numbers, addresses, appointments, and people’s name so that I won't forget them. Making memory notes is also an adjustment I have made to better handle a busy schedule. Organization is key when you are dealing with a chronic illness, and I find any adjustments that can make for a more comfortable day are a plus. Amazingly, these things have really improved my day. – Sylvia

For me, being a father of an 8-year-old that does karate and basketball and a second son who is 1 month old, using a calendar app has really helped me. I make sure to have a reminder for taking morning and night meds. For any important school or after school sports info, I also have a big calendar on the wall where I write everything, and I put it in plain sight so I can’t miss it. I also color coordinate everything. My son’s school had one color. Basketball had another color. Karate has its own color, and so on. It’s been very helpful. Another things that really helps me is a routine. Trying to do things in order as much as possible. After a few months, it just becomes habit to do what you need to do. – Henry

Staying on top of a busy schedule

How do lupus warriors keep their lives in balance? One essential strategy is planning. You plan your workdays or school assignments; your kids’ activities and homework; your family’s meals and snacks; and fun activities, rewards, and rest periods to help you recharge. You use one or even two calendars or a phone app to stay on top of everything.

But another way to keep your schedule manageable is to know when you need to say no. You may have high expectations for yourself, but if you push too hard, your health could suffer, or you could have a flare. The best approach is to make time for the things that really matter, say no to the things that are less important, and leave the rest for another day. Saying no can be difficult, but it is a valuable skill to learn as part of managing your lupus.

Give yourself permission to focus only on priorities, and cut yourself some slack. Remember, your health comes first. Read our tips on how to say no and maintaining a sensible schedule.

Lupus Foundation of America Responds to Release of Data from Trial of Anifrolumab https://www.lupus.org/research-news/entry/lupus-foundation-responds-to-release-of-data-from-trial-of-anifrolumab https://www.lupus.org/research-news/entry/lupus-foundation-responds-to-release-of-data-from-trial-of-anifrolumab Sandra C. Raymond, Chief Executive Officer of the Lupus Foundation of America, issued the following statement in response to today’s announcement by AstraZeneca and MedImmune for the results of the first of two Phase III clinical trials of anifrolumab, a biologic agent studied for the treatment of lupus. 

“The Lupus Foundation of America and lupus investigators are extremely disappointed to hear today’s announcement noting that the TULIP I trial of anifrolumab did not meet its primary endpoint of a statistically significant reduction in disease activity in patients with lupus.  Despite the disappointing results from this first Phase III study, there are reasons for people with lupus to remain hopeful.  The results of a parallel study of anifrolumab, TULIP 2, are to be released later this year.

"The target of anifrolumab is Type I interferon signaling. This target is known to be a critical pathway in lupus, and it is well-established that anifrolumab blocks these signals. The clear distinction between treatment and placebo in the Phase II study was very exciting to the community and we remain hopeful that more information will support the continued development of this promising treatment.

"Despite results announced today, people with lupus can remain optimistic that new therapies may soon become available due to the outstanding interest and investment by pharmaceutical and biotech industries.  We are also encouraged that several additional promising treatments remain in the near-term pipeline. 

"The Lupus Foundation of America is leading game-changing research initiatives to improve outcomes and create a clear path forward to advance the science and medicine of lupus.  We remain committed to improving the quality of life for people with lupus, and we look forward to continued progress in the fight to end lupus so people no longer have to suffer from its brutal impact."

Learn more about our national lupus research program.
Read more about today's announcement is available on the AstraZeneca website.

4,200 Miles, 25 days, 10 states, 1 mission: End Lupus https://www.lupus.org/blog/entry/4200-miles-25-days-10-states-1-mission-end-lupus https://www.lupus.org/blog/entry/4200-miles-25-days-10-states-1-mission-end-lupus In 2016, Keith’s brother-in-law Vincent passed away unexpectedly due to vasculitis caused by lupus. Vince had lived with lupus for more than 20 years and was diagnosed as a teenager. It had inhibited many parts of his life, and Keith wanted to do something to honor him and to make an impact in the fight against lupus.

Keith used to be an avid cyclist and saw Inspired To Ride, a documentary on the Trans Am Bike Race, a 4,200-mile cross-country cycling event. After seeing the documentary, he knew this would be the perfect way to bring awareness to lupus while raising money for lupus research so that other families would not have to go through the pain that they faced following Vince’s passing. Shortly after deciding to embark on the Trans Am Bike Race, Keith connected with Make Your Mark™ to make his fundraiser a reality.

(Below: Keith Rahn with his brother-in-law's parents)

Keith Rahn with parents

The solo, self-supported bike race spanned 10 states – starting in Astoria, Oregon, through the Rockies, over the Appalachians and finishing in Yorktown Virginia. Shortly after starting the race, Keith fell ill and after a particularly trying day on the trail where he was faced with the beating sun and heavy winds, he questioned whether he could finish the race.

“I got a hotel and needed to recover, and while I was there somebody I follow from an athlete’s with lupus group commented on my post saying that all the things I was dealing with – sun exposure, fatigue, inflammation – were everyday occurrences for people living with lupus,” said Keith.

After realizing this, Keith knew that he had to finish the race – for his brother-in-law and for everybody living with lupus every single day.

(Below: Keith Rahn's wife and daughter)

Rahn's wife and daughter

Keith finished the race in 25 days, raising thousands of dollars and finishing 28th out of 116 participants.

“I pedaled; I did the cycling, but an undertaking like this or any fundraiser is a team effort,” said Keith. “Whether you do a one-off fundraiser or plan a big event, your family and friends are there to support you. You’re a team.” 

Interested in starting a fundraiser to help the fight against lupus? Check out our Make Your Mark platform and we’ll help make your fundraiser a reality.


Senate Passes Legislation for Lupus Research Funding https://www.lupus.org/general-news/entry/senate-passes-legislation-for-lupus-research-funding https://www.lupus.org/general-news/entry/senate-passes-legislation-for-lupus-research-funding We are excited to share that the U.S. Senate today passed legislation that includes major funding for lupus research programs. The legislation combined the Senate Appropriations Committee’s Fiscal Year 2019 Department of Labor, Health and Human Services and Education (LHHS) bill with the U.S. House of Representatives-passed Fiscal Year 2019 Department of Defense spending bill, which the House voted to approve in June.

The spending package passed today provides critical lupus-specific research funding stimulated by the Lupus Foundation of America and its national network of advocates, including:

  • $5 million in funding for the Lupus Research Program at the DoD 
  • $7.5 million in funding for the National Lupus Registry program at the Centers for Disease Control and Prevention, a $1 million increase from FY2018
  • $2 billion increase in funding for the NIH, which is expected to provide nearly $110 million for lupus research in FY 2019
  • $2 million for the Office of Minority Health's National Health Education Lupus Program

The increased and continued funding reflects the hard work and continued year-round outreach of lupus advocates to contact their elected officials and urge them to increase support for these critical lupus research programs, including during the Foundation’s annual Advocacy Summit.

Next Steps

Now that the Senate has completed their work on the DoD and LHHS Appropriations bills, we anticipate that the House and Senate will move forward together to complete the legislative process and pass a final spending package that increases funding for lupus programs.

Stay tuned for additional details on the final spending package, including if further advocacy efforts and outreach to Congress will be necessary. In the meantime, please take a moment to sign up to become a lupus advocate and help us to continue to make a difference.

Exagen Diagnostics and CareFirst Team Up to Study AVISE Lupus Test https://www.lupus.org/research-news/entry/exagen-diagnostics-and-carefirst-team-up-to-study-avise-lupus-test https://www.lupus.org/research-news/entry/exagen-diagnostics-and-carefirst-team-up-to-study-avise-lupus-test Exagen Diagnostics and CareFirst BlueCross are working together to study the effectiveness of Exagen's new AVISE® Lupus test. The AVISE diagnostic test was developed to improve accuracy in lupus diagnosis.

The Lupus Foundation of America (LFAsm) funded the early research on the biomarkers used in the AVISE® Lupus test. Also, the Foundation’s advocacy efforts led to the creation of a new government medical research fund used to develop the test.  Early diagnosis and appropriate treatment decisions are critical strategic goals of the LFA.  

The collaboration between Exagen and CareFirst also will help demonstrate the test’s effectiveness to produce an accurate early diagnosis of lupus and whether it is cost effective to use in primary care and rheumatology settings. Data from this study may influence reimbursement decisions by health insurers for the AVISE® Lupus test.  

More information about the collaboration is available from the CareFirst media release.

Join Us in Moving Research Forward https://www.lupus.org/blog/entry/join-us-in-moving-research-forward https://www.lupus.org/blog/entry/join-us-in-moving-research-forward We know that life with lupus can be very difficult at times, and while there is no cure, there is hope. Through research, we can improve the lives of people living with or affected by lupus — and one day, find a cure.

But without enough people taking part in clinical trials, research cannot advance and individuals with lupus will continue to wait for answers. According to clinicaltrials.gov, in the United States today, there are 75 lupus trials looking for patients. All together, these lupus studies need more than 50,000 people to take part!

Our passion for research includes making sure that you are aware of your options and how you can participate in moving research forward. We’ve partnered with Antidote, a digital health startup that has developed an online search tool that will help connect you to relevant research. 

The search tool, called Match is easy to use and helps match you to a trial with just a few questions. It is located on our National Resource Center on Lupus along with other useful information about clinical trials.

Why Join a Clinical Trial

You may think of clinical trials as a last resort, however clinical trials should be considered any time you are making treatment decisions, because sometimes the best treatment options are not yet approved. We encourage you to talk with your rheumatologist about clinical trials and to make the decision together.

You can find more information about taking part in a clinical trial on our Resource Center and start searching for a specific trial.

Award Supporting Early Career Scientists Aims to Reduce Future Shortage of Lupus Researchers https://www.lupus.org/research-news/entry/award-supporting-early-career-scientists-to-reduce-shortage-of-researchers https://www.lupus.org/research-news/entry/award-supporting-early-career-scientists-to-reduce-shortage-of-researchers Grant awardees focus on moving research forward in two critical areas, childhood lupus and kidney damage.

Today, the Lupus Foundation of America announced the recipients of its 2018 Gary S. Gilkeson Career Development Award (CDA), created to address the increasing challenges faced by early career scientists working toward establishing a lupus research career. The 2018 recipients are Dr. Joyce Chang, attending physician in the Division of Rheumatology at Children's Hospital of Philadelphia, and Dr. Paul Hoover, a newly appointed instructor in Medicine and Rheumatology attending at Brigham and Women’s Hospital in Boston.

The CDA provides funding for the most critical areas of lupus research and is intended to facilitate the professional development of rheumatology, nephrology, and dermatology fellows who are interested in forming a career as an independent clinician-scientist at an academic, medical, or research institution. The award supports these fellows at a critical and challenging time in their careers – when they must make difficult decisions about their future paths.

“Beyond funding, one of the most commonly cited barriers by rheumatologists to establishing an academic research career is the lack of mentorship,” said Dr. Karen H. Costenbader, Chair of the Lupus Foundation of America Medical-Scientific Advisory Council. “The Foundation’s Career Development Award is helping to fill the critical need for more lupus-focused researchers by filling the gap in mentorship, funding and offering continued support through our medical community. If we don’t support scientists in the lupus research field, we won’t have the knowledge, studies and advances needed to care for individuals living with this complex disease.”

Because of the complexity of lupus and the shortage of researchers in the field, grantees are required to work with an established clinical scientist during their study. This mentorship component of the award ensures grantees have the support and guidance needed throughout the period of their research.

“When I received the Career Development Award last year, it gave me the opportunity and support I needed to establish a research career path,” said Dr. Jessica Turnier, 2017 CDA recipient who recently received a junior faculty appointment as a Clinical Lecturer at Michigan Medicine Pediatric Rheumatology Clinic at C.S. Mott Children’s Hospital. “The ability to design and pursue my own research to study lupus nephritis allowed me to develop both a unique niche and the necessary skills to become a successful young researcher. Additionally, the preliminary data I generated is now the basis upon which I’m designing further studies in lupus nephritis.”

Dr. Chang’s funding will directly support her research into identifying non-invasive measures of vascular health in children. There is a great need for these non-invasive measures since children are at a greater risk for cardiovascular disease than those with lupus onset in adulthood, making it critical to prevent cardiovascular disease and related damage early.

Dr. Hoover is receiving the CDA for the second consecutive year. His research investigates how five newly discovered myeloid immune cells in lupus kidney disease coordinate the immune response and damage in kidney tissue. By drawing connections between cell types and patient outcomes, Dr. Hoover’s work has the potential to reveal which immune cells and pathways are associated with kidney damage and identify drug targets in groups of patients for further study. Successful completion will lead to new models to explain human lupus and provide the basis for Dr. Hoover to develop his own laboratory to study mechanisms of human lupus kidney disease.

“The Career Development Award has seen all six of its grantees continue their lupus research and many move on to prestigious new roles advancing their careers,” said Leslie Hanrahan, Vice President of Education and Research, Lupus Foundation of America. “This year we are thrilled to support Dr. Chang and Dr. Hoover whose studies are focusing on two of the most critical areas of lupus research – childhood lupus and kidney involvement – and we are encouraged that the contributions from their studies will further our understanding of lupus and its impact.”

Learn more about the CDA award.

Sharing the Journey: Back to School https://www.lupus.org/blog/entry/sharing-the-journey-back-to-school https://www.lupus.org/blog/entry/sharing-the-journey-back-to-school The Sharing the Journey series is by people like you and for you. In their own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.

This month, we asked Sharing the Journey participants the following question:

How do you prepare or how do you help your children prepare for going back to school while dealing with lupus?

I prepare to return to school by taking the week before to do nothing but relax, rejuvenate, and get back into a set schedule. I tend to pack my summers with summer classes, internships, volunteer work, visiting friends and family, and taking trips. So taking that week before returning to school allows my body to recharge. I also make sure that everything I need for classes is organized and ready to go. I’m the world’s worst “rester,” so getting ready to go back to school means, for me, it’s time to get serious about a week of rest. – Kayla

I haven't had kids at home for decades now so it hasn't been an issue for me in years. If it were, I would make sure to get plenty of rest for myself and likely have lunches made the night before and hopefully homework done as well. – Betsy

When I was in school, up until a few years ago, I used to try and have everything together well in advance so that I wasn't getting too stressed. I tried to get my books and materials as soon as they were available. Thankfully, I wasn’t moving in and out of a dorm when I got sick, so I didn't have to worry about that. Now that I work full time, I don't have that same anticipation of the school year starting. In some ways, that's a relief, but in other ways, I really miss it. – Leslie

I have two elementary age children and I have to say that I am always excited for back to school. For me, this means more time to rest. If I am off of work and they are in school, then I get a nap, which we all know can make us feel so much better and able to finish out the day! I keep two calendars, a big monthly one with all our activities and a weekly whiteboard one. This way everyone knows where we are going and what we are doing. Organization is the key to a busy school year.Roxi

I'm currently preparing myself to enroll in classes starting in September with an online extension school. Preparing to continue my classes is a challenge and difficult. With lupus, it is mentally draining. I was taking a couple of classes this summer, and the days I would have flares it was impossible to get up and out of the bed to do my class assignments. Many days, I had to regroup because the pain was horrific for me. My suggestion for anyone living with lupus and preparing to go back to school is that first and foremost know your body. It is also an asset to know your limits. For many with lupus it means medications and lots of rest. Also, it is important to know that every day may be different because our bodies are unpredictable with this disease. Don't push yourself or overdo it. On the other side, I also feel that when parents are there for a child emotionally, going back to school becomes less burdensome for the parent and child. – Sylvia

I currently go to college full time at Grand Canyon University, as well as working full time at a hospital. Since I am graduating two years early from GCU, I have summer classes, so basically I had classes all year long. I would say at times it is stressful, but in the end, I try to not overwork myself, considering that I could flare up due to putting too much on myself. I try to do meditation techniques if it gets to be too much. I have always set my mind to achieve good grades and graduate early with over a 3.9 GPA. School is very important to me. I always aim high for anything I want. – Kyra

Preparing for a new school year

If you’re a student with lupus – or a parent of one – getting ready for a new school year can be extra challenging. Parents, you probably know it’s important to be organized so that when the first school day comes, no one panics! Keeping a calendar with activities and assignment deadlines can help a lot.

If you’re a student with lupus, part of your preparation may involve resting – taking a breather before life gets hectic. It’s also important to know how to manage your health at school. This means being mindful of your symptoms, making smart decisions, and knowing your limits. You may also have questions about how to talk to classmates and teachers about your lupus.

We have guides specifically for parents, kids, and teens that are loaded with tips. And if you’re in high school and want to know what to tell your friends about lupus, we’ve got you covered.

Walking to Honor a Loved One https://www.lupus.org/blog/entry/walking-to-honor-a-loved-one https://www.lupus.org/blog/entry/walking-to-honor-a-loved-one Elsa Rivera has spent her life trying to understand the mystery that is lupus. Her mother, Norma Guzman, was diagnosed two years prior to having Elsa; in 2015, she passed away from liver and kidney failure – a direct result of lupus. 

Growing up, Elsa witnessed her mother struggle to participate in every day routines; whether it was her inability to hold a steady job due to illness or to partake in simple pleasures such as enjoying time outside on a sunny day. At the same time, Elsa discovered the extent of her mother’s perseverance as she took on part-time babysitting, volunteered at Elsa’s school, and raised Elsa and her three siblings. During this time, Elsa remembers feeling frustrated because she did not fully understand what it meant to have the disease beyond her mother being tired and sick “all the time.” When Elsa was 18, her mother’s health took a turn and she asked Elsa to become her proxy.

“When my mom asked me to become her proxy, that was when I knew things were getting worse and it was a really serious situation,” said Elsa. “I felt like I really had to start paying attention to what was going on and educate myself about lupus. I had to learn about her [Norma’s] medication and really get involved with her health team.”

As proxy, Elsa would coordinate her mother’s numerous doctors’ appointments. She alternated attendance with her family and ensured they all maintained a shared a journal to track their mother’s health related information. All the while, Elsa was working and going to school full time.

The year that her mother died, Elsa and her family started Team Norma Strong and attended their first Walk to End Lupus Now® event. 

Elsa recalls, “Seeing all of the purple and the people, I was so overwhelmed and emotional. I really had no idea, until then, how many people suffered with lupus or had a loved one who was a lupus warrior. For so long, it was just my mom and my family. But at the event, I felt an immediate connection with others.”

Elsa and her family have since participated in the Walk to End Lupus Now® Boston on Team Norma Strong for three years. The Walk has allowed Elsa to share her and her mother’s experience to help others feel less alone in the process.

Be Powerful this Fall and sign up for a Walk to End Lupus Now® event in your area.

Take Charge of Your Health https://www.lupus.org/blog/entry/take-charge-of-your-health https://www.lupus.org/blog/entry/take-charge-of-your-health

By Lauren Metelski
Health Education Nurse Manager for Lupus Foundation of America

Living with lupus can be a challenge – whether you're newly diagnosed, or have been living with lupus for a long time.

Thanks to our new Take Charge series, you can learn the skills needed to manage everyday life with lupus. Many of you have already played a big role in the creation of this series by telling us what challenges you are facing. We Health Educators have heard from you that lupus is unpredictable. You tell us that others don't understand what you're going through. You tell us that the treatments seem daunting and it is hard to juggle all the things you have to manage in your life.

This critical educational series offers answers to common questions and valuable resources to help you take charge of your health and wellness. By arming yourself with information, you can be prepared to manage the unpredictability of this disease, even in the toughest of times.

Strategies to Help Manage Life with Lupus

Living with lupus means assessing your health on a regular basis and actively making healthy choices - something you're probably already doing, every day. Our Take Charge series will provide useful tips and strategies you can use to manage your care, effectively communicate your needs to others, and keep up with your treatment plan.

We hope the series will inspire you to take an active role in your own care and treatment and to communicate with your family and your care team so they hear and understand you.

How to Sign Up for the Series & Take Charge

Join us in taking charge of your health by signing up for this eight-week email series. Shortly after subscribing, you will receive the first educational email from the series, and the remaining seven emails will follow at one per week.

I encourage you to learn more about the series and sign up today by visiting Lupus.org/takecharge.

House Committee Approves Funding of Critical Lupus Programs https://www.lupus.org/general-news/entry/house-committee-approves-funding-of-critical-lupus-programs https://www.lupus.org/general-news/entry/house-committee-approves-funding-of-critical-lupus-programs House Appropriations Committee Chairman Rodney Frelinghuysen (R-NJ) with lupus advocates.

Today, the U.S. House of Representatives Appropriations Committee passed the Fiscal Year 2019 Labor, Health and Human Services, and Education (LHHS) appropriations bill. This bill contains critical funding for lupus research and education, including:

  • $6.5 million for the National Lupus Patient Registry Program at the Centers for Disease Control and Prevention (CDC).
  • A significant funding boost to a record $38.3 billion for the National Institutes of Health (NIH). This represents a $1.25 billion increase from 2018 funding.
  • $2 million for the Office of Minority Health's National Health Education Lupus Program. 

The Foundation and its advocates were instrumental in establishing the National Lupus Patient Registry at the CDC and the clinical trial action plan at OMH, and have long advocated for more funding at NIH. Robust funding for these lupus programs is crucial for furthering the understanding of the disease, reducing time to diagnosis and supporting research programs that can lead to the discovery of safe and effective lupus treatments.

Importantly, the LHHS appropriations bill includes “report” language that provides guidance on how the CDC, OMH and NIH should utilize the funding. Specifically, the bill encourages the CDC to study the lifetime impacts of lupus, including on children and young adults. It also recommends that the CDC support continuing the development of self-management programs. For OMH, the bill directs the agency to work with the lupus community to expand the development of tools in order to increase minority participation in clinic trials. The bill also includes language encouraging the NIH to continue to support lupus research, including studies to understand why the disease disproportionately affects women of color.

Thank you to our national network of lupus advocates for contacting your representatives throughout the year and urging them to support this critical funding for lupus research. You are leading the fight against lupus!

Next Steps

The LHHS bill now moves to the full House floor for consideration. Two weeks ago, the Senate Appropriations Committee passed their version of the LHHS appropriations bill. While both bills provide $2 million for the lupus program at OMH, the Senate committee’s version provides a boost in funding for the National Lupus Patient Registry and NIH, to $7.5 million and $39.1 billion respectively.

Once the full House and full Senate have passed their versions of the LHHS bill, they will convene a conference committee to resolve the differences in the bills and prepare a version for final passage. When this happens, we’ll need advocates to reach out and encourage the committee to adopt the Senate’s funding numbers for CDC and NIH. Sign up to become a lupus advocate to know when your outreach to Congress can make a difference.

Major Lupus Stem Cell Study Receives Additional Funding from the National Institutes of Health https://www.lupus.org/research-news/entry/major-lupus-stem-cell-study-receives-additional-funding-from-the-national-i https://www.lupus.org/research-news/entry/major-lupus-stem-cell-study-receives-additional-funding-from-the-national-i Lupus Foundation of America and the National Institute of Allergy and Infectious Diseases to co-fund an innovative clinical study that could generate progress towards new treatments.

The Lupus Foundation of America announced the launch of a new public-private partnership with the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health, to co-fund a major phase II study to evaluate mesenchymal stem cells (MSC) as a treatment for moderate to severe lupus.  NIAID has made a five year commitment to support the study and will fund a data coordination center, site and safety monitoring, and mechanistic studies for the duration of the study. For year 1 of the study, NIAID has committed 720K in funding. This is an addition to the Foundation’s previously announced $3.8 million in funding over the five years.

This study is the first step in determining whether stem cell therapy holds promise as a safe and effective alternative for people with lupus who do not benefit from the current treatments available. The study also seeks to determine if MSC stem cell therapy may diminish the often debilitating long-term effects of lupus, reduce the need for medications like steroids, which have harmful side effects and stop damage to vital organs. The US-based mesenchymal clinical study is expected to open for enrollment in summer 2018.

The collaboration with NIAID demonstrates the growing trend and importance of public-private partnership between government, non-profit and research partners to advance research efforts into the causes of lupus and the discovery of new treatments. This is particularly important for a disease like lupus that is greatly underfunded, relative to its scope and devastation.

“Robust funding is vital to moving lupus research forward. Without sufficient funding from public and private resources, research treatments will be delayed, and the search for better treatments and cures will be seriously impaired,” said Sandra C. Raymond, Chief Executive Officer of the Lupus Foundation of America. “People with lupus need and deserve better treatment options now. This clinical study represents an innovative step forward in lupus research, and our hope is that we will be able to add stem cell therapy to the arsenal of treatments available for people with lupus.”

Visit the Lupus Foundation of America’s website for additional information about the study.

Sharing the Journey: Developing a care team https://www.lupus.org/blog/entry/sharing-the-journey-developing-a-care-team https://www.lupus.org/blog/entry/sharing-the-journey-developing-a-care-team The Sharing the Journey series is by people like you and for you. In their own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.

This month, we asked Sharing the Journey participants the following question:

Who makes up your care team (medical and support) and what advice would you give someone who needs to develop a care team?

My care team consists of several important people in my life. My mom is my main emotional support and, since she has lupus too, she provides me with helpful tips and encouragement. My best friend/roommate is my other source of emotional support because she helps me to smile and laugh when I'm not feeling well and constantly reminds me to take better care of myself. The main doctor I see for my lupus is my rheumatologist. I consistently see him to make sure that all of my organs are taken care of and my lupus is not becoming more active. He is very knowledgeable and talks to me about practical ways to prevent lupus flares. My other main member of my support team is my GYN doctor. He takes care of me from the hormone side of things and is also in constant communication with my rheumatologist about the effects of the medicines he gives me (since lupus can be tied to hormones). And of course, I can't forget my ophthalmologist, who makes sure my eyes are healthy and show no signs of damage from the medicine I’m taking. – Becca

My care team consists of my immediate family and a good rheumatologist. My family knows me best and they know when I need the most help or want to be independent. It also helps to have a good rapport with your rheumatologist and primary care MD, or any other specialist. That way, if something goes wrong, you can count on having someone help deal with a flare. – Roxi

I would advise people living with lupus to consider an interdisciplinary approach. I visit my rheumatologist, cardiologist, nephrologist etc. But musts are also the dermatologist, therapist, physical therapy, and nutrition to come up with a plan of action for travel or summer life. I’ve even told my hairdresser that she’s a part of my team, because she has to work magic on my fickle hair.Monique
My care team is made up of my rheumatologist, who is so awesome and is very approachable. It is also made up of pain management, who are always very understanding and patient with me. My care team also consists of a physical therapist, cardiologist and neurologist. I have a great team of medical doctors. I also have loved ones who support me. It is very important to have this team, because there are days when so much is going on. It's good to know that they all work together for the good of my lupus care. My advice is to definitely get a care team together, because when you have different organs that are being attacked, that doctor or specialist is in place. It is so important. It makes things so much easier.Sylvia

As a young person working in a busy industry, it’s important that I have a care team that will encourage me and keep my health in mind. My mom also has lupus and we keep an eye on each other, watching for negative patterns and discussing our self care routines. I also have a great rheumatologist whose office is active online, with a portal where I can renew my prescriptions and ask questions between appointments without making time consuming calls during work hours. If your doctor offers a similar service, you should use it to your advantage. It’s also vital that my close friends understand my condition and are willing to make plans that won’t overtax my health. In short, make sure that your care team offers the support that you need for your day-to-day life! You need people keeping your best interests in mind for the long haul as well as for individual emergencies.Alex

Although the summer time means vacations, sun, and fun for most, for me it means having to be even more aware of the importance my care team plays in my daily battle against lupus. My support team of course begins with my doctors including my rheumatologist, pediatrician, on-campus physician, retina specialist, and many more. These doctors have become more like friends and personal cheerleaders since my diagnosis, but nothing compares to my friends and family. My family is a constant support system and never fails to check in on me every day even though I am gone at college. My best friends, along with the rest of my sorority sisters are my family away from home and never fail to make sure that I am the best version of myself even on my worst days. Finally, my mentor and coach is the extra set of ears I need on a hard day. She is always there to listen and tell me that I can do this even when I don’t think I can. Looking back on all of these people, the one piece of advice I could give to someone trying to establish a care team would be to surround yourself with people who believe in you although your disease may inevitably be “invisible.” When your doctors, family and friends all believe in you, then they are able to more compassionately care on your hard days and cheer you on during the good days.Tiffany

Building the support system you need

Managing a disease like lupus often requires more than one doctor. You probably have a medical team of doctors and other health care professionals who coordinate your care. But you also need a team of people who can give you emotional, physical and spiritual support. That support can improve your quality of life, and people who have more social support tend to do better physically and emotionally.

How do you build your support network? Think about your needs. Then, look at the important people in your life. Are they family members? Friends? Neighbors? You may also want to include coworkers, lupus support group members, or a therapist. Next, ask for help. A strong support system will have people who can help in different ways -- people you can count on when you need them.

Our guides can help you coordinate your medical care and strengthen your network, and you may want to join our online community, LupusConnect.

Adrienne Baer: Running for a Loved One https://www.lupus.org/blog/entry/adrienne-baer-running-for-a-loved-one https://www.lupus.org/blog/entry/adrienne-baer-running-for-a-loved-one This profile is part of a series highlighting people who are participating in the Team Make Your Mark program. This September, Team Make Your Mark walkers, joggers and runners will take on the Rock ‘n’ Roll Philadelphia 5K, 10K or Half Marathon. In addition, participants can join the Choose Your Own Race team to run or walk in any race or distance of their preference. For more information, please visit www.lupus.org/makeyourmark.

In early March 2018, Adrienne received the most unexpected phone call of her life. Her aunt suddenly passed away. Growing up, Adrienne knew that her aunt was often sick, but she had no idea that she suffered from lupus. It wasn’t something that her aunt talked about or shared with her.

After the heart-breaking news she received in March, Adrienne knew she had to do something to honor her aunt, while also raising lupus awareness. Following a quick google search, Adrienne decided to take on her first half marathon at Rock ‘n’ Roll Seattle with Team Make Your Mark.

“I immediately felt like I was part of a team. I had a coach to help me with fundraising, I had coach Dan to help me with training and after our team call I realized I was going to be running with people with stories similar to mine, but also with people that had lupus. It was unbelievably motivating.”

Although Adrienne didn’t know her aunt had lupus and was just learning about the disease herself, she was ready to hit the ground running with her fundraising. “I had to become comfortable with sharing my story and be confident in the fact that people wanted to listen and they wanted to help,” said Adrienne. She started with sharing a post on her social media pages talking about her aunt’s story, her sudden passing and the effect it had on her as well as her family. She also reached out individually to close friends to share her journey with Team Make Your Mark, and soon after started seeing donations come in.

While Adrienne aimed to raise $1,250, once she reached her goal she decided to increase her fundraising, knowing that every goal she set she could pass – which led to her raising $3,200! In the process of fundraising, Adrienne also heard from numerous people thanking her for her efforts and sharing how lupus had affected them – whether through a friend or family member.

When it came to race day, Adrienne was nervous – but she knew she had a huge support team in Team Make Your Mark, a team that became like family. “You can’t miss our purple on the race course!” said Adrienne.

“My best advice for race day and training is to think of that person. There are so many days when you need to do a training run, and maybe it’s pouring rain and you don’t want to do it. Hang onto that why and get out there!”

LFA-Funded Research Studies Continue to Reap Benefits for People with Lupus https://www.lupus.org/research-news/entry/lfa-funded-research-studies-continue-to-reap-benefits-for-people-with-lupus https://www.lupus.org/research-news/entry/lfa-funded-research-studies-continue-to-reap-benefits-for-people-with-lupus Study results recently published by Lupus Science & Medicine show the continuing contributions of research funded by the Lupus Foundation of America (LFA). A partnership among three highly respected lupus research centers found that the patented biomarker, Erythrocyte-bound C4d (EC4d) can be used to monitor lupus disease activity.

While investigators must confirm these results in more extensive future studies, the EC4d biomarker provides doctors with a more sensitive tool to monitor disease activity among their patients with lupus, enabling a doctor to detect flares and other changes in the patient’s status earlier than they might obtain using other currently available tests.

Measurement of the EC4d biomarker is one of five tests included in the AVISE® SLE Monitor Test developed by Exagen Diagnostics. Research to develop this biomarker was supported initially in 2008 through a Lupus Foundation of America Novel Pilot Projects research grant.  Dr. Amy Kao, then with the University of Pittsburgh’s Lupus Center of Excellence, was funded for a study on the C4d biomarker.

The following year, the LFA awarded a childhood lupus research grant to Dr. Joseph Ahearn at the University of Pittsburgh and Dr. Hermine Brunner at the University of Cincinnati, for a study on the same biomarker for use in childhood lupus.

Research on the C4d biomarker also was funded in response to the LFA’s advocacy efforts that sought to increase funding for lupus research through the U.S. Department of Defense Congressionally Directed Peer-Review Medical Research Program. Dr. Ahearn was awarded a $1.4 million translational research grant award in 2008 for expanded research on C4d.

Using data from all of these studies, Exagen Diagnostics was able to develop the AVISE test for lupus that can be used to help confirm a diagnosis of lupus and, as this recently completed study suggests, may also be used to monitor lupus disease activity. All of these lupus research studies support the LFA’s strategic goals to reduce the time to diagnosis and to increase access to treatment and care.

The study results published in Lupus Science and Medicine include data and blood samples from 124 persons with lupus. The investigators compared measurements obtained using the EC4d biomarker with data collected using other biomarkers.  They then analyzed the data's relationship with measurements from existing instruments commonly used to measure lupus disease status.

The investigators found that the patented EC4d biomarker can reliably measure lupus disease activity, supporting its use as a monitoring tool in clinical practice. Future research on this biomarker will determine if EC4d can be used as an objective endpoint in clinical trials of potential new therapies for lupus and, as a guide for physicians when they are making critical treatment decisions for their patients with lupus.

Senate Committee Advances Funding for Lupus Research https://www.lupus.org/general-news/entry/senate-committee-advances-funding-for-lupus-research https://www.lupus.org/general-news/entry/senate-committee-advances-funding-for-lupus-research Senate Appropriations Committee Chairman Richard Shelby (R-AL) with lupus advocates.

Today, the Senate Appropriations Committee voted to approve its Fiscal Year 2019 Department of Defense (DoD) Appropriations bill, as well as its Fiscal Year 2019 Departments of Labor, Health and Human Services, and Education (LHHS) Appropriations bill. Both spending bills include critical new funding to advance lupus research. This includes a $1 million increase for the National Lupus Patient Registry at the Centers for Disease Control and Prevention (CDC). 

Senate DoD Funding

The Senate Appropriations Committee’s DoD bill includes specific language that directs funding to lupus research. With this vote, the Committee continues to recognize that more research into lupus is desperately needed.

Senate LHHS Funding

The LHHS spending bill contains critical funding for lupus research and education, including:

  • $7.5 million for the National Lupus Patient Registry Program at the CDC, a $1 million increase from FY 2018 funding!
  • A significant funding boost to a record $39.1 billion for the National Institutes of Health (NIH). This represents a $2 billion increase from 2018 funding!
  • $2 million for the Office of Minority Health's National Health Education Lupus Program. 

Importantly, the legislation includes language directing the CDC and OMH on how to utilize the funding. Specifically, the Committee encourages CDC to focus on natural history studies of lupus to determine the lifetime burden of the disease including on children, support existing childhood lupus registries, and to expand physician education by enhancing the National Resource Center on Lupus, which can reduce time to diagnosis and lead to earlier interventions. For OMH, the Committee supports continued efforts to develop action plans to increase minority participation in lupus clinical trials.

The Senate's support for the National Lupus Patient Registry at the CDC and for the clinical trial action plan at OMH – programs established through the Foundation’s advocacy efforts – in addition to the funding at the NIH and DoD, once again validates the power of lupus advocates. Just three months ago, thousands of advocates visited, emailed and called their elected officials during the Lupus Foundation of America’s National Advocacy Summit urging Congress to support these initiatives. Clearly, their voices have been heard!

The Foundation is also grateful for the Senate Appropriations Committee’s leadership in support of people with lupus, particularly Chairman Richard Shelby (R-AL) and Defense Subcommittee Ranking Member, Dick Durbin (D-IL) who have championed efforts to advance lupus research. 

Next Steps

The bills now head to the full Senate floor for consideration. 

House Department of Defense Update

Earlier today, the U.S. House of Representatives passed their DoD spending bill which includes $5 million in funding for the Lupus Research Program. Click here to learn more. 

Please follow us on Twitter and Facebook, and sign up to become a lupus advocate to stay up-to-date on the latest lupus news from Washington and to learn when your outreach to Congress can make the most impact in the fight against lupus.

House Passes Bill to Provide $5 Million for the Lupus Research Program https://www.lupus.org/general-news/entry/house-passes-bill-to-provide-5-million-for-the-lupus-research-program https://www.lupus.org/general-news/entry/house-passes-bill-to-provide-5-million-for-the-lupus-research-program We are thrilled to share that today, the full U.S. House of Representatives passed legislation which includes $5 million in funding for the Lupus Research Program at the Department of Defense (DoD) in 2019. This comes after the House Appropriations Committee approved the bill earlier this month.

The Lupus Foundation of America and its network of lupus advocates from across the country led the work to establish the DoD Lupus Research Program, which aims to fund research that will advance the field, and lead to breakthroughs in identifying the causes of lupus, ways to speed diagnosis and develop new medicines to prevent and treat the disease.

We want to thank and applaud the efforts of lupus advocates for contacting their representatives throughout the year and urging them to continue supporting and funding this important DoD program.

For more details on how the House spending bill impacts lupus research, please read our earlier post.

Senate Takes Action on Lupus Research

Earlier today, the Senate Appropriations Committee voted to advance two spending bills with critical new funding to advance lupus research, including a $1 million increase for the National Lupus Patient Registry! Click here to learn more about the lupus funding in these two bills.

Please follow us on Twitter and Facebook, and sign up to become a lupus advocate to stay up-to-date on the latest lupus news from Washington and to learn when your outreach to Congress can make the most impact in the fight against lupus.

House Committee Spending Bill Delivers Win for Lupus Research https://www.lupus.org/general-news/entry/house-committee-spending-bill-delivers-win-for-lupus-research https://www.lupus.org/general-news/entry/house-committee-spending-bill-delivers-win-for-lupus-research The U.S. House of Representatives Appropriations Committee today passed the Fiscal Year 2019 Department of Defense (DoD) Appropriations bill, which includes $5 million in funding for the Lupus Research Program at the DoD in 2019.

The Committee’s action demonstrates the power of lupus advocates who throughout the year requested continued funding of the DoD program, including during the Lupus Foundation of America’s National Advocacy Summit in March.  

The bill now heads to the full House of Representatives for a vote and the Senate Appropriations Committee still must act on its version of the legislation. If enacted into law, the bill would bring the three-year funding total for the Lupus Research Program to $15 million, and increase the DoD’s total commitment to lupus research to over $36 million.

The DoD’s Lupus Research Program aims to fund research that will advance the field, and lead to breakthroughs in the causes of lupus, its diagnosis and the development of new medicines to prevent and treat the disease.

The Lupus Foundation of America led the work toward securing a lupus-specific program at the DoD beginning in 2003, and ultimately with the help of its advocates worked with Congress to establish the program in 2017. 

The Foundation has advocated endlessly, for over 10 years, to establish the Lupus Research Program.

Please follow us on Twitter and Facebook, and sign up to become a lupus advocate to stay up-to-date on the latest lupus news from Washington and to learn when your outreach to Congress can make the most impact in the fight against lupus.

Sharing the Journey: Summer Sun Protection https://www.lupus.org/blog/entry/sharing-the-journey-summer-sun-protection https://www.lupus.org/blog/entry/sharing-the-journey-summer-sun-protection The Sharing the Journey series is by people like you and for you. In their own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.

This month, we asked Sharing the Journey participants the following question:

How do you prepare for social events with so many of them being outdoors in the summer?

To get ready for the summer heat and being outdoors, I usually pack sunscreen. The sun tends to burn my skin very easily leaving my body to ache and joints to hurt. I try to cover myself with light clothes and apply sunscreen every 1 to 2 hours if I am in the sun.Kyra

Lots of sunscreen and/or cover up! I recently went on a South African safari.  It was hot, all my friends were in shorts and tank tops, but I had on long sleeves, long pants, and a hat.Kayla

Preparation is key when you know that you will be spending a great deal of time in the sun. As a college student, I have gone on several beach trips and attended my fair share of pool parties. Sunscreen is the first line of defense I always use. I use 100+ SPF lotion or spray because it is effective for a long time and in my experience, prevents sunburns quite well. Protective clothing is always an option. I try to find ways to style sun protective shirts and hats strategically when I am at the beach, so I can protect myself from the sun while remaining in style. I'll often tie shirts off at my waist or only wear a hat when I am out of the water. Once I am at the event occurring outdoors, I make a conscious effort to seek out shade. Many times, I have been able to steer most of my conversations and interactions under umbrellas or in the shade of trees. – Becca

I always use sunscreen! At least SPF 50+. – Chandra

Usually in the summer months I try to go out before noon or before the heat rises to avoid a flare up. Using sunscreen is a must. In the case where I'm caught in the midst of the heat, I make sure I have water on hand to stay hydrated and find shade as much as I can.Sabrina

The way I prepare for outdoors event is to make sure that if I have to be outdoors, I have a high SPF sunscreen. My skin is very sensitive to the sun, so I don't stay out in the sun too long. Water is my best friend because I'm always thirsty and feeling not hydrated enough. Finally, I wear clothing garments that are cotton. I am unable to tolerate a lot of other fabrics when outdoors in the sun. I notice I began to really get rashes from head to toe, which is very painful and uncomfortable. I have days when I’m just not able to participate in an outdoor event because the direct sun actually makes me very sick. – Sylvia

This is a hard one for me, as I seem to have a reaction to most sunscreens, but I know that sun protection is important, especially for people with lupus. I try to stay out of the sun as much as possible. I also try to use makeup products for my face that have SPF in them and then use regular sunscreen on other exposed areas, as my face seems to react the most to regular sunscreen. – Leslie

Since I have young children I cannot miss out on all the summer fun. So, SUNSCREEN it is!! And of course hats and umbrellas if I’m going to be in direct sunlight. Always being prepared with everything in my car is key!Roxi

Need to know facts about sun safety

Most everybody knows about the damaging effects of ultraviolet (UV) light, but for those with lupus the cells are much more sensitive to UV damage which can trigger a lupus flare (an increase in lupus symptoms).

There are many ways to stay safe from the sun and it’s important to find the methods that work best for you. Some tips for staying protected from the sun include:
• Use sunscreen with SPF 30 or higher that blocks both UVA and UVB
• Wear long sleeves, pants and wide-brimmed hats made of fabrics that protect you from the sun
• Plan outdoor activities for early in the morning or later in the evening to avoid peak sun hours

To learn more facts about sun safety, read this resource and speak with your doctor about the best ways to protect yourself from UV rays.


Department of Defense Announces Lupus Research Program Awardees https://www.lupus.org/general-news/entry/department-of-defense-announces-lupus-research-program-awardees https://www.lupus.org/general-news/entry/department-of-defense-announces-lupus-research-program-awardees Lupus Foundation of America congratulates grant recipients

The Department of Defense (DOD) today announced the award of nearly $5 million to 13 innovative and impactful lupus research projects through its new Lupus Research Program.

The Lupus Foundation of America and its advocates led a multi-year effort and worked with Congress to establish the Lupus Research Program in 2017. The program aims to fund research that will advance the field, and lead to breakthroughs in the causes of lupus, its diagnosis and the development of new medicines to prevent and treat the disease. Recipients of the program’s grant awards represent the proposals ranked highest by a peer-reviewed process in a competitive field of 121 high-quality applications.

“We’re excited to see the Lupus Research Program moving forward with funding critical new research studies that will improve our understanding of the disease and lead to new treatments for our military heroes and all people living with this cruel and potentially fatal disease,” said Stevan Gibson, President of the Lupus Foundation of America. “This is truly a significant moment as the Lupus Foundation of America and our advocates spent 14 years working tirelessly to establish the Lupus Research Program and also have been heavily involved in setting the strategic direction and priorities for this new dedicated funding stream for lupus research.”

Through its award mechanisms, the Lupus Research Program selected six recipients for its Concept Award and seven research programs for its Impact Award. The Concept Award supports the exploration of highly innovative new concepts or untested theories that address important issues in lupus. The Impact Award encourages applications that support the full spectrum of research projects or ideas that specifically focus on scientific and clinical lupus issues, which, if successfully addressed, have the potential to make a major impact in lupus research.

The Lupus Research Program is designed to fund high-impact research into the disease that is not already being conducted by the National Institutes of Health, Department of Veterans’ Affairs, or any other government agency. Emerging research indicates that our military veterans may be at a greater risk of developing lupus and other autoimmune diseases. Factors common to military service, such as post-traumatic stress disorder (PTSD), vaccines, chemical and toxin exposures, ultraviolet light, and infectious agents have been associated with the development of lupus.

The Lupus Foundation of America was the first organization to work toward securing a lupus-specific program at the DOD beginning in 2003 when it advocated to include lupus research as part of the DOD’s Congressionally Directed Medical Research Program. The Foundation also spearheaded the effort to create the Congressional Lupus Caucus, a group of nearly 60 U.S. Representatives who are championing the fight against lupus on Capitol Hill and who played a pivotal role in creating and securing funding for the Lupus Research Program. To date, the DOD has provided more than $31 million for lupus research, including $10 million appropriated by Congress for the Lupus Research Program in FY 2017 and FY 2018. 

The Lupus Research Program is guided by a vision to cure lupus through a partnership of scientists, clinicians, and consumers. The program’s funding is provided on a competitive grant basis and projects are peer reviewed. Two of the Lupus Foundation of America’s medical advisors and a past board chair are serving on the programmatic panel, which sets the direction for the programs and helps to make funding decisions. In addition, the Foundation nominated seven individuals living with lupus to serve as consumer reviewers, bringing their perspectives to research projects that applied for funding.

Researcher  Organization Award Mechanism
Karen Cerosaletti  Benaroya Research Institute at Virginia Mason Impact Award
Alexander Szalai  University of Alabama at Birmingham Impact Award
Montserrat Anguera  University of Pennsylvania Impact Award
Joan Merrill  Oklahoma Medical Research Foundation Impact Award
Laura Plantinga  Emory University Concept Award
Ziaur Rahman  Pennsylvania State University, Milton S. Hershey Medical Center Concept Award
Adam Lacy-Hulbert  Benaroya Research Institute at Virginia Mason Impact Award
Betsy Barnes  Feinstein Institute for Medical Research Impact Award
Fabienne Mackay  University of Melbourne Concept Award
Caroline Jefferies  Cedars-Sinai Medical Center Impact Award
Eric Meffre  Yale University Concept Award
R. Looney  University of Rochester Concept Award
Mark DiFrancesco  Children's Hospital, Cincinnati Concept Award


DOD Releases Pre-Announcement of FY 2018 Lupus Research Funding Opportunities https://www.lupus.org/general-news/entry/dod-releases-pre-announcement-fy-2018-lupus-research-funding-opportunities https://www.lupus.org/general-news/entry/dod-releases-pre-announcement-fy-2018-lupus-research-funding-opportunities NEWS RELEASE via DEPARTMENT OF DEFENSE - CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS

The FY18 Defense Appropriation provides $5 million (M) to the Department of Defense Lupus Research Program (LRP) to support innovative and impactful research that addresses fundamental issues in lupus. As directed by the Office of the Assistant Secretary of Defense for Health Affairs, the Defense Health Agency, J9 Research and Development Directorate manages the Defense Health Program (DHP) Research, Development, Test, and Evaluation (RDT&E) appropriation. The managing agent for the anticipated Program Announcements/Funding Opportunities is the Congressionally Directed Medical Research Programs (CDMRP) at the U.S. Army Medical Research and Materiel Command (USAMRMC).

The LRP is providing the information in this pre-announcement to allow investigators time to plan and develop applications. FY18 LRP Program Announcements and General Application Instructions for the following award mechanisms are anticipated to be posted on the Grants.gov website in June 2018. Pre-application (Letter of Intent) and application deadlines will be available when the Program Announcements are released. This pre-announcement should not be construed as an obligation by the government.

Applications submitted to the FY18 LRP must address at least one of the three Focus Areas listed below:

  • Understand lupus disease heterogeneity including, but not limited to, progressive stages of lupus disease over time, strategies and technologies to subtype patients, lupus disease mechanisms, biopsychosocial studies, personalized medicine, variation in treatment and its effects on patient outcomes, socioeconomic studies, environmental studies, and epidemiological studies.
  • Understand how the underlying genetic components and gene environment interactions of lupus disease relate to clinical disease characteristics using functional genomic studies.
  • Determine the pathobiology of lupus in target human tissues including, but not limited to, imaging studies, genomics of lupus disease in particular tissues, and metabolomics and how understanding the underlying pathobiology will improve quality of life of patients.

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A pre-application (Letter of Intent) is required and must be submitted through the electronic Biomedical Research Application Portal (eBRAP) prior to the pre-application deadline. All applications must conform to the final Program Announcements and General Application Instructions that will be available for electronic downloading from the Grants.gov website. The application package containing the required forms for each award mechanism will also be found on Grants.gov. A listing of all CDMRP and other USAMRMC extramural funding opportunities can be obtained on the Grants.gov website by performing a basic search using CFDA Number 12.420.

Submission deadlines are not available until the Program Announcements are released. For email notification when Program Announcements are released, subscribe to program-specific news and updates under “Email Subscriptions” on the eBRAP homepageFor more information about the LRP or other CDMRP-administered programs, please visit the CDMRP website.

International Survey Shows Low Global Understanding About Lupus https://www.lupus.org/general-news/entry/international-survey-shows-low-global-understanding-about-lupus https://www.lupus.org/general-news/entry/international-survey-shows-low-global-understanding-about-lupus A large-scale international survey reveals that low awareness of lupus results in public misconceptions about the disease. The lack of understanding contributes to the stigmatization of people with lupus, often leaving them feeling isolated from family and friends. The full 16-nation survey results are being released on the occasion of World Lupus Day, May 10, by the World Lupus Federation (WLF). 

Key survey findings include:

  • While lupus is a global health problem, more than half (51%) of survey respondents were not aware that lupus is a disease
  • Of those surveyed that knew lupus is a disease, almost half (48%) over the age of 55 did not know of any complications associated with lupus

Despite the overall lack of awareness, the survey revealed that more than 40% of respondents aged 18-34 were aware that kidney failure is a frequent complication of lupus. The familiarity among this group likely results from celebrities like American singer and actress Selena Gomez speaking out about lupus on social media.  Gomez announced last September that she had a kidney transplant after lupus severely damaged her kidneys.

“This global survey and the Federation's outreach efforts are critical to ensuring everybody understands lupus and engaging people around the world in fighting this terrible disease,” said Julian Lennon, photographer, author, musician, philanthropist and global ambassador for the Lupus Foundation of America, the WLF’s Secretariat.

The survey, one of the largest of its kind ever conducted in lupus, was commissioned by GSK which shared the results as part of its commitment to supporting the WLF and helping to improve the lives of people with lupus.

The survey also revealed social stigmas toward people living with lupus because of a misconception that lupus is contagious. Of those people surveyed who were aware that lupus is a disease:

  • Only 57 percent were very comfortable or comfortable hugging someone with lupus
  • Less than half (49%) were very comfortable or comfortable sharing food with someone with lupus
  • 1 in 10 (11%) respondents believed that unprotected sex might contribute to the development of lupus

“There is a clear need to increase understanding of lupus to prevent misconceptions, tackle the stigma and help to encourage social integration for those living with the disease,” said Jeanette Anderson, Chair of Lupus Europe, one of the founding members of the World Lupus Federation.

Despite low public knowledge about lupus, the survey found broad support for efforts to raise awareness among survey participants.

  • Among of survey participants, 76% of respondents thought that more should be done to highlight and explain the impact lupus has on people living with lupus.
  • 65% of respondents felt the best way to increase understanding of lupus is by sharing more information online, on social media and via traditional media.

In response, WLF member organizations are ramping up efforts to improve understanding of lupus and its impact. “We are elevating support for people living with lupus through education, services, and advocacy programs,” said Teresa Gladys Cattoni, President of the Asociacion Lupus Argentina, (ALUA) and member of the nine-nation WLF steering committee.

Individuals can show their support by pledging to learn more about lupus. To add your name to the pledge list, obtain additional survey data, and download resources to raise awareness of lupus, visit the World Lupus Day website.

Sharing the Journey: Low-Impact Movements https://www.lupus.org/blog/entry/sharing-the-journey-low-impact-movements https://www.lupus.org/blog/entry/sharing-the-journey-low-impact-movements The Sharing the Journey series is by people like you and for you. In their own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.

This month, we asked Sharing the Journey participants the following question:

What types of low-impact movements or physical activity is part of your routine to help you manage lupus?

I love this time of year when the weather starts to get warm and I can get outside. Of course I have to be super careful of the sun and wear sunscreen and hats always! I have been lucky to be able to continue with my physical fitness. I have found that over the years I have to be forgiving to my body. Some days I can really workout hard and nothing bothers me, and other days I feel sore or too tired. I used to beat myself up about it, but finally realized that I need to just embrace the good days when they happen and not get down on myself when I need the rest. For me the bike is the best option, it is gentle on the knees and not jarring, so this is my main workout. I also do some light weight lifting to keep my bones healthy. Having exercise as a normal part of my life has helped so much, not just physically, but mentally too. I feel so much better about myself when I get my body moving!! – Roxi

For me, walking is my consistent activity. I have previously done kickboxing, but due to injuries, I prefer walking. I also feel that in maintaining a walking routine, I do not get as set back from not being able to do higher impact activities. – Leslie

I am a firm believer in workouts that utilize nothing but body weight to build muscle. I rarely utilize weights or any type of machine when working out because they pose a higher risk of injury and often fatigue my body to an unhealthy level. I am a big fan of Pilates for building core strength. There are so many exercises you can do using only a mat that can help you get stronger abs! I also love yoga because it encourages flexibility alongside strength. However, my favorite form of exercise is dance. Ballet is terrific for building muscle strength (especially for the legs) and tap and jazz are terrific for building cardio strength. Dance is such a wonderful form of exercise because you can have fun while you are working out. I love it because I'm not just strengthening my muscles to make them look better, but I am actually making my body look beautiful while doing it. – Becca

I rarely miss a day of walking and that is anywhere from a mile and a half upwards to a total of five miles total in a day. I try to have at least some of this in nature. I currently live near a trail that takes me by a local river and I get to see various birds as well as trees and shrubs in their various stages of coming forth into growth. I also do various spiritual practices and prayers as I walk which gives some meaning in addition to the physical exercise. I used to have high blood pressure which is gone. My original flare damaged several heart valves which have been fully restored and some of this has been due to exercise. I also lift weights six days a week alternating core and legs with upper body. Due to use of so much prednisone in my twenties, I have developed osteoporosis in my mid-sixties so strength as well as weight bearing exercise is one way to work with that which is helpful. It is also helpful for epilepsy which came from a later lupus flare which I am working on healing at this time. – Betsy

I walk a lot. As a teacher I spend most days on my feet and this helps me to keep active, but it can aggravate my joint pain. I also love to spend time in the pool during these warmer months. Swimming is something that I have always enjoyed and now with my lupus, the water helps me to be active without the joint and muscle pain.Michelle

Since I'm currently a full time law student and work part time I don't get as much physical activity as I should. However, I have found that walking my dogs each morning does wonders for my morning stiffness. If it wasn't for having to walk them, I probably wouldn't move around as much, and the stiffness would last longer. When it's warm I love to do water aerobics - which is low-impact, relaxing, and strengthening.Kayla

Benefits of physical activity

If you have pain or are feeling fatigued, being active is likely the last thing on your mind. However, low impact movements and other physical activities can improve some lupus symptoms and have mental, physical and social benefits. Low impact movements that are less stressful on your body can help strengthen muscles to prevent joint weakening and damage. Your physician or specialist can help identify a routine that will work best for you.

Find out more about how low-impact movements can help manage your lupus symptoms and the benefits of staying active. And, if you’re looking for a way to get moving, find a Walk to End Lupus Now® event in your area or make your steps count as a virtual walker.

Marlo Hemminger: Going the Distance for Lupus https://www.lupus.org/blog/entry/marlo-hemminger-going-the-distance-for-lupus https://www.lupus.org/blog/entry/marlo-hemminger-going-the-distance-for-lupus This profile is part of a series highlighting runners who are participating in the Team Make Your Mark program to train for and run a race while raising funds to help solve the cruel mystery of lupus. In 2018, there will be two official team events – the Rock ‘n’ Roll Seattle in June and Rock ‘n’ Roll Philadelphia in September – and participants can choose from a variety of distances. In addition, participants can join the Choose Your Own Race team to run or walk in any race or distance of their preference. For more information, please visit www.lupus.org/makeyourmark

Shortly after Marlo Hemminger was born in 1986, her mom Mary was diagnosed with lupus. Throughout her mom’s life and to this day, Marlo has supported her through every health challenge she has faced because of the disease. Now, she is aiming to finish her first full marathon through Team Make Your Mark – Choose Your Own Race in honor of her mother at the Rite Aid Cleveland Marathon on May 20.

“Training for this race has been an amazing journey, and I’m proud to do something for my Mom since she has always supported me,” said Marlo. “I can’t imagine what my life would be like without my Mom and raising funds to support lupus research is one way of giving back for all that she has done for me, plus I get the opportunity to represent the lupus community by wearing my purple!”

Mary has struggled with kidney problems since her diagnosis and in 2006, she had to have a kidney transplant. She was fortunate that her brother Bernie was a perfect match and the operation was a success. Thankfully, after the transplant, Mary has not required any further dialysis.

Although her flares have been infrequent, she has had continuing struggles with her joints and had to have both hips replaced in 1988 due to side effects from the prednisone steroids that she was taking during her treatment. She has also had ongoing issues with her shoulder joints but hopes to never have to get a replacement.

Mary has been an inspiration for Marlo throughout her life, and even though she has only finished a half marathon previously, she felt that training for and completing a full marathon would give her the opportunity to raise awareness and generate funds for lupus research through donations from family and friends.

“This opportunity has allowed me to step outside of my comfort zone and push myself beyond excuses and self-imposed limitations, now I know that I am capable of achieving this goal and supporting my Mom and the entire lupus community in the process,” said Marlo.

Marlo aims to raise $2,500 through her fundraising efforts, and she has raised more than $2,000 so far. While her family and friends may not all be familiar with the disease, many people are donating because they recognize that it is important to Marlo.

Mary is in good health now and plans to travel from her home in Omaha, Nebraska to Cleveland, Ohio for the race. As she says, "I think it is wonderful that Marlo is doing this – lupus does not get the attention that it deserves and knowing that my daughter is willing to take on a huge challenge like the marathon to help make a difference means a lot to me. Go, Marlo!"

Getting Involved with Lupus Awareness Month https://www.lupus.org/blog/entry/getting-involved-with-lupus-awareness-month https://www.lupus.org/blog/entry/getting-involved-with-lupus-awareness-month Lupus often strikes without warning, and that’s exactly what happened to Gina’s mother Kim back in 2005. Prior to her diagnosis, Kim was always punctual, if not early, but over time she struggled to have the energy to wake up in the morning, let alone get out of bed. She also started noticing rashes and having problems with puffiness and pain in her hands.

Like many who suffer from lupus, Kim’s symptoms are often invisible to her friends, family and even people at work.

“The exhaustion and brain fog is hard to explain to people, and that can be really frustrating,” shared Kim. “But the biggest source of support has been my two daughters and the information I’ve gained thanks to the Lupus Foundation of America.”

Gina and her mom want to see more awareness of how debilitating lupus can be and how it can affect your daily life, your family and even your favorite activities.

This year, Gina is committed to making a difference during Lupus Awareness Month – both for her mom and to help spread awareness about lupus while raising funds for the critical research that is needed to develop better treatments, and ultimately a cure.

“Starting a fundraiser for Lupus Awareness Month with our wine company Sans Wine Co. just made sense. Our new rosé comes out in May, Mother’s Day is in May and it’s Lupus Awareness Month,” said Gina. “While we’re still a growing, self-funded company, we know that every dollar helps and we’re hoping to raise a few thousand dollars from our fundraiser.”

During Lupus Awareness Month, Sans Wine Co. will be donating 50% of sales from their special and limited Rosé of Carignan labels to the Lupus Foundation of America (95 six-pack cases will be available).

When asked what advice she would give to others looking to get involved with fundraising during Lupus Awareness Month Gina shared, “Regardless of what it is, whether it’s $100 a year, $100 a month, a small party to fundraise or just volunteering your time, it all helps. Get involved in whatever way you can.

Learn more about Sans Wine Co. and their give-back promotion during Lupus Awareness month.