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.
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.
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.]]>
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:
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!
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.]]>
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.]]>
This month, we asked Sharing the Journey participants the following question:
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
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.]]>
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!”
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.]]>
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:
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.
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.]]>
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.]]>
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.]]>
This month, we asked Sharing the Journey participants the following question:
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
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.
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.
|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|
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:
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 homepage. For more information about the LRP or other CDMRP-administered programs, please visit the CDMRP website.]]>
Key survey findings include:
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:
“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.
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.]]>
This month, we asked Sharing the Journey participants the following question:
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
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.]]>
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!"]]>
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.]]>
The study, “Lupus – An Unrecognized Leading Cause of Death in Young Women: Population-based Study Using Nationwide Death Certificates, 2000-2015,” led by UCLA researchers, found that lupus was among the top leading causes of death in females ages 5-64 and was the fifth ranked cause of death among black and Hispanic women ages 15-24, after excluding the three common external injury causes of death from analysis. These findings demonstrate that lupus is a concerning public health issue and stresses the need for more funding to be dedicated to lupus research, specifically for children and teens. Often, those in this age group with lupus are at a greater risk for more severe and life-threatening consequences of this disease.
“This eye opening study funded by the Lupus Foundation of America truly shows that we need better treatment options for children and teens as well as all those living with lupus. Because of this, we will be dedicating all funds from our 24 hour fundraiser, ‘Put on Purple Day’ on May 18, toward the Michael Jon Barlin Pediatric Research Program, which supports research into innovative and effective therapeutic treatment options for children with lupus,” said Sandra C. Raymond, CEO of the Lupus Foundation of America. “We’re asking all Americans to Go Purple this May to spread awareness, raise funds and take part in the fight against lupus.”
While the impact of this disease is high and widespread, nearly two-thirds of the public knows little or nothing about lupus beyond the name. The symptoms of lupus are far-ranging and often mimic those of other diseases, making it challenging to diagnose and treat. People with lupus can experience everything from fatigue, skin rashes and hair loss to cardiovascular disease, strokes and kidney failure.
Lupus Awareness Month is a time to rally the public to bring greater attention and resources to ending the suffering caused by this disabling and potentially fatal autoimmune disease. This year some ways to show support for those fighting lupus include:
For more ways on how you can get involved and join the fight, visit the Lupus Foundation of America’s lupus awareness month website.]]>
An excellent example of the success and benefits of the Foundation’s LIFELINE Grant Program is the research lab at the New York University (NYU) Langone Health, headed by Dr. Jill Buyon, which is pursuing new insights into lupus risk factors and flares. After being supported by a LIFELINE Grant in 2014, Dr. Buyon’s research applied for and received a $6.7 million NIH grant to support a five-year research project through their newly launched Translational Center of Molecular Profiling in Preclinical and Established Lupus (COMPEL). Dr. Buyon and her colleagues will explore why some women who have a specific set of antibodies (anti-SSA/Ro) never develop lupus while others do.
Dr. Buyon is a leading authority in the field of neonatal lupus (NL), a rare condition associated with anti-SSA/Ro and or anti-SSB/La antibodies from the mother that affect the fetus. The most severe symptom is congenital heart block (CHB), which causes a slow heartbeat. Although very rare, newborns of women with lupus are at higher risk for developing this potentially life-threatening complication. CHB is usually detected when the fetus is between 18 and 24 weeks old. The condition does not disappear, and affected infants will eventually need a pacemaker.
In 2014, facing uncertainty in funding from the NIH due to government budget cuts, Dr. Buyon applied for a LIFELINE Grant to study whether taking Plaquenil (hydroxychloroquine or HCQ) during pregnancy prevents the recurrence of CHB. The outcome of the study, “Preventive Approach To Congenital Heart Block with Hydroxychloroquine (PATCH),” was very positive. Forty-one pregnancies resulted in 42 live births. Thirty-nine babies, including one set of twins, had no signs of cardiac problems.
Dr. Buyon subsequently applied for and received a research grant the following year from the NIH, enabling her team to complete enrollment in this study. The study generated essential data which has been cited in nearly a dozen scientific papers, furthering the body of knowledge about lupus and pregnancy. The outcome of this study and the ongoing work of Dr. Buyon’s lab at the NYU-Langone Lupus Center enabled the institute to obtain the multi-million dollar NIH research award.
The Lupus Foundation of America congratulates Dr. Buyon and her team for securing the NIH grant so this vital research can continue. The Foundation is extremely pleased to have played a role during a very critical period, allowing their work to proceed uninterrupted. We look forward to reporting on many new developments from this lab as their research in lupus progresses
More information about the $6.7 million NIH grant project is available on the NYU-Langone Health website.]]>
Yen and Singh found that overall, lupus was among the top 20 leading causes of death in females ages 5-64. Among black and Hispanic women lupus ranked 5th in the 15-24 years, 6th in the 25-34 years, and 8th-9th in the 35-44 years age groups, after excluding the three common external injury causes of death from analysis. These findings continue to underscore the burden of disease minority women with lupus experience and also demonstrate that lupus is a concerning public health issue for women overall.
Lupus is a chronic autoimmune disease that can impact any part of the body. It affects millions of people worldwide and is challenging to live with and extremely difficult to treat. Despite the widespread prevalence of lupus and seriousness of the disease, lupus is rarely recognized as one of the leading-causes-of-death in young women. Instead, many lupus deaths are attributed to consequences such as kidney failure and heart attacks.
This eye opening study promotes disease awareness and highlights the seriousness of this potentially life-threatening disease. Currently, lupus is not in the CDC’s annual selected list of causes of death for women. Recognizing this burden may influence government policy, research funding, and persuade doctors to list the disease as the cause of death.
Learn more about this study by reading the available abstract.
The Relative Burden of Lupus Mortality Lupus- An Unrecognized Leading Cause of Death in Young Women: Population-based Study Using Nationwide Death Certificates, 2000-2015.
Eric Y. Yen, MD, MS1, Ram R. Singh, MD1,2,3,4
Arthritis & Rheumatology
On behalf of the board of directors, staff and supporters of the Lupus Foundation of America, we wish to express our sincere condolences to the family of Barbara Bush for their loss. We extend our hearts and prayers to the family during this difficult period.
Mrs. Bush has inspired people with lupus around the world through her strength and courage as she and her family faced many of the same challenges from living with an autoimmune disease. She and her family have supported efforts to increase awareness of lupus, expand research on the causes and cures for lupus, and services that provide care and comfort to people living with lupus.
The former First Lady wrote the “Foreword” to the very popular book, Lupus Q&A, Everything You Need to Know. In it she wrote, “One of the great mysteries of our time, [autoimmune disease] inflicts psychological and physical damage upon its sufferers. Systemic lupus erythematosus [lupus], in particular, has caused untold devastation and suffering.” She added, “I know, for this disease has touched, and will doubtless continue to touch, the members of my family.”
We join with her friends and admirers from around the world in paying tribute to her life that was full of kindness, compassion and determination for all people who are facing health challenges.
There has been growing interest among people with lupus in the possible benefits from the medical use of cannabis (marijuana) to relieve chronic joint pain. The Lupus Foundation of America’s policy on medical marijuana calls for further scientific research on the medical use of marijuana for treating and alleviating the symptoms of lupus. More research in this area will provide evidence regarding its safety and effectiveness.
Now, researchers at the Feinstein Institute for Medical Research on Long Island, New York have announced they are leading a nationwide clinical trial that will test the efficacy of a synthetic cannabinoid mimetic (imitating) drug, without mood- or behavior-altering properties, for the treatment of joint inflammation in lupus.
This new investigational drug candidate, JBT-101 (lenabasum), is similar in structure to tetrahydrocannabinol (THC), the active chemical in cannabis, however lenabasum lacks specific side groups that changes drug binding to certain receptors that alter brain function. Therefore, instead of affecting the brain, this oral therapy is designed to increase production of anti-inflammatory molecules in the body while reducing production of molecules that increase inflammation.
Dr. Meggan Mackay, professor of medicine at the Feinstein Institute, is the lead investigator for the clinical trial which will determine the efficacy of lenabasum to treat joint inflammation among 100 people with lupus. An additional 14 clinical trial sites across the United States also are participating in the two-year study sponsored by the National Institutes of Health (NIH) National Institute of Allergy and Infectious Diseases (NIAID) and supported by Corbus Pharmaceuticals.
Investigators will evaluate whether lenabasum may be able to serve as an alternative to immunosuppressant therapies, which often have many potentially debilitating side effects. Several smaller studies in other inflammatory disorders have reported positive results with lenabasum.
Adults with lupus that have active joint disease and at least moderate pain, and who may be interested in finding out more about this clinical trial, can contact Andrew Shaw at 516-562-2591 or Latchmin Persaud at 516-562-3814.
The Lupus Foundation of America congratulates Dr. Mackay and her team on their efforts to evaluate lenabaum as a potential treatment for lupus, and the National Institute of Allergy and Infectious Diseases (NIH-NIAID) and Corbus Pharmaceuticals for supporting this study.]]>
With the stock market near an all-time high, now is a great time to make a gift of appreciated stocks to the Lupus Foundation of America. You will not only help support people living with lupus, but you can avoid capital gains taxes, brokerage fees, or sales commissions.
To make a gift of securities, notify your broker in writing and provide them with the following information:
DTC #: 0793
Lupus Account #: 4038-7296
Stifel Nicolaus & Co.
Account Executive: Karin Mottus
Sr. Branch Operations Manager: Vicky Wilhelm
One South Street, 30th Floor
Baltimore, MD 21202
You can also call the Lupus Foundation of America at 202-349-1153 for instructions on how to complete the transfer.
A donor-advised fund is an easy way to make charitable donations and receive immediate tax benefits. Here’s how:
If you are 70½ or older, you can give a give a gift to the Lupus Foundation of America as a way to fulfill your required minimum distribution (RMD). The benefit to you is that even if you do not itemize your taxes, the gift distribution will not be considered taxable income.
Any 401(k), 403(b), Keogh or profit-sharing pension is eligible. When completing or amending your enrollment, simply name Lupus Foundation of America as the beneficiary. Keep in mind that when distributed to a non-profit, these assets are tax-free, but when given to a loved one, they are taxable.
Please consult with your tax or financial advisors to determine the best charitable giving strategies for you.
We are so grateful for your generosity. Please contact Shane Yost at firstname.lastname@example.org or (202) 349-1153 to discuss how your gift can help further our mission.]]>
This month, we asked Sharing the Journey participants the following question:
I love to clean and I'm stubborn, so making a plan for tackling my spring cleaning is the only way to avoid over-doing it. I generally handle one room at a time. While I'm cleaning I always find something that needs to be done that wasn't on my original list. I have to force myself to add it to the end of the list or add it to another day because I tend to want to get everything done all at once. I don't have allergies so wearing a mask isn't necessary for me; however, the ups and downs of spring cleaning weighs heavy on my knees, ankles, and lower back. As a result, I try to sit to clean when possible, instead of squatting. Also, at the end of a cleaning day I reward myself by soaking in a hot bath. I also find that raising windows, or opening blinds to let the sunlight in makes for a happier cleaning process (but of course I wear my sunscreen!) – Kayla B.
For college students, the weeks between spring break and the end of school are incredibly busy. At this point, I'm two weeks behind in homework and four weeks behind in sleep. Amidst all the academic responsibilities, finding time to clean, organize, and declutter is incredibly difficult but definitely necessary. However, when I let responsibilities apart from schoolwork build up during the week and try to deal with them on a daily basis, they distract me from my academics and prevent me from making significant headway on my school assignments. So, I try to set aside one day a week (Tuesday) for all my non-school related responsibilities, such as grocery shopping, laundering, vacuuming, mending, organizing, and disinfecting. During the week, I write down what I call "non-school to dos" in a list on my phone whenever I think of them. This way, I never forget them and I don't have to worry about them until Tuesday. The rest of the week, I can devote my time to my schoolwork and to attending all my rehearsals, meetings, classes, and work shifts. If anything urgent arises that cannot wait until Tuesday, I try to deal with it as soon as I get home, before I settle in to work on homework or take a nap. – Becca M.
It helps for me to break up tasks. I never do an intense cleaning anymore and I always break things up with stretching. When I vacuum or sweep, I always alternate from left to right arms as well. I also like to play music to make it more enjoyable. I take walks to ensure I get my blood flowing. This and stretching are both helpful for me. Also varying the task and having something to focus on. – Betsy H.
If you have lupus, I think it’s important to be organized all the time, not just for spring. I try and de-clutter several times a year, that way it never gets too bad. My husband is also a huge help with cleaning, so having friends and family are a must! We also like to have someone come in and do deep cleaning about every three to four months, this makes it easier to keep up. I think whatever works to help keep the stress down is great. – Roxi W.
Whether you are cleaning this Spring or maintaining your cleaning year-round, it’s important to have a plan, ensure cleaning isn’t stressful and take into account health considerations. If you need suggestions or recommendations for keeping your cleaning healthy, please contact one of our health educators.
If you have household items you are looking to donate, be sure to check out the Lupus America Household Goods Donation Program. Proceeds from the sale of donated items are used to support lupus research, programs and support.]]>
When To'Ccorra was diagnosed with lupus in 2015, she didn’t tell anyone outside of close family and friends because she didn’t want people to feel sorry for her.
Doctors originally told her that she had discoid lupus as she had developed round dark spots all over her body. However, not long after her diagnosis, she began having breathing problems and doctors found blood clots in her lungs, then her joints and muscles began to ache, and she had to be hospitalized.
Her rheumatologist then added systemic lupus to her diagnosis and she was put on blood thinners. The problems continued to proliferate as doctors informed her that she had early onset for heart failure.
Now 31 years old, To’Ccorra takes sleeping pills, muscle relaxers, blood thinners, anti-depressants and several other medications. She says that fatigue is her biggest struggle right now but her strong spiritual faith keeps her going.
Depression also has been a struggle in the past, but To’Ccorra says that lupus has actually helped her manage depression.
“I have to stay upbeat and positive since my mood has an impact on this illness, and my main motivation is to stay out of the ER,” says To’Ccorra. She has learned to ‘snitch on herself’ and no longer suffers in silence since she feels that having a support system is critical for minimizing depression. She also started journaling last summer to help keep her spirits high.
But nothing brings her more joy than giving back by organizing fundraisers for lupus research.
“I am making a difference by using my skills to do something that means a lot to me,” says To’Ccorra. “With the help of family and friends, I know that my purpose in life is to bring us together to do something good and give back to this wonderful community in any way we can.”
To’Ccorra is a professional party planner and as such, she has organized several events to raise funds for lupus. Over the past couple years, she has raised nearly $2,500 through various events – including hosting a dance class, game night and brunch. In addition, she has received numerous donations from local community businesses who support her events and donate a portion of their sales to lupus research.
To’Ccorra has big plans for future fundraising initiatives, but she also wants to encourage other people who want to support the lupus community to host their own events and activities through Make Your Mark™ during Lupus Awareness Month. She offers the following suggestions to get started:
To’Ccorra also believes that it is important to build on progress, once the relationships and plans are in place then it is easier to organize additional events and set higher fundraising goals.
Learn more about Make Your Mark™ fundraising program.]]>
Increase funding for the National Lupus Patient Registry at the Centers for Disease Control and Prevention to help identify what causes lupus and how to speed time to diagnosis.
Advocates also saw the impact of their outreach to their legislators over the past year as President Trump just today signed into law the FY 2018 Omnibus Appropriations Bill, which includes increased funding for critical lupus research and education programs through September 30.
“Under the leadership of the Congressional Lupus Caucus, members of Congress have long recognized the importance of supporting the lupus community, and have over time stimulated millions of dollars to increase lupus research funding to help improve the lives of all people affected by this cruel disease,” said Sandra C. Raymond, CEO of the Lupus Foundation of America. “This year our advocates, including many youth advocates, showed their strength, power and dedication to changing the future by leading the charge to discuss with their elected officials their daily struggles with the disease and show the urgent need to increase funding for research, access to quality and affordable care, and awareness of lupus.”
In addition to advocating on Capitol Hill, the National Lupus Advocacy Summit provided those living with lupus and their families with empowering activities including interactive workshops and educational programming with a special focus on childhood lupus. The Summit’s first panel session discussed the latest news and challenges in childhood lupus research and drug development, and provided hope that there is encouraging work underway and progress being made. For years, the Lupus Foundation of America has made childhood lupus research a priority, funding research and supporting efforts to better understand the disease in children and teens and to help advance the development of new treatments.
To advance awareness of lupus across Congress, the Lupus Foundation of America also hosted an educational Congressional Briefing. Speakers during the briefing included Susan Manzi, M.D., M.P.H., Chair of the Medicine Institute at Allegheny Health Network and Medical Director of the Lupus Foundation of America; Karen Costenbader, M.D., M.P.H., Director of the Lupus Program at Brigham and Women’s Hospital and Professor of Medicine at Harvard Medical School and Chair of the Lupus Foundation of America’s Medical-Scientific Advisory Council; two co-chairs from the Congressional Lupus Caucus, Representative Ileana Ros-Lehtinen (R-FL) and Representative Bill Keating (D-MA); Xcenda’s Jennifer Snow, and lupus advocate Amarissa Mauricio.
“Thanks to our year-round lupus advocates and support from Congress, we have taken several steps forward in the fight against lupus, however more work remains ahead of us,” said Dr. Manzi. “To this day, there has only been one drug developed specifically for lupus and most treatments used for lupus are borrowed from other diseases and can have damaging side effects. It’s inspiring to see so many lupus advocates make their voices heard this week as they met with their representatives, shared their stories and discussed the hope they have for a world free of lupus.”
This year, the Lupus Foundation of America also honored those whose advocacy has made a difference in the fight against lupus at the Lupus Heroes Reception. The honorees included lupus advocates Monique Gore-Massy (New York) and Tiffany Alsbury (Mississippi), as well as representatives from the Childhood Arthritis and Rheumatology Research Alliance (CARRA).
The 2018 National Lupus Advocacy Summit was made possible by the support of the Lupus Foundation of America’s donors, board members and grant support from the following organizations:
Lupus is a misunderstood autoimmune disease that can ravage different parts of the body in an unpredictable manner. It is difficult to diagnose, hard to live with and challenging to treat. There is only one treatment approved by the FDA created specifically for lupus – Belimumab. No treatment works for all patients during a lifelong chronic illness, and the white paper establishes that the current standard of disease control is unacceptable, identifying specific problems with the design of lupus clinical trials that are getting in the way of developing effective treatments.
The recommendations in the white paper highlight five key solutions for optimizing lupus clinical trials, which include making trials available to people with all types of lupus, decreasing the size of trials, using recent scientific breakthroughs to select patients most likely to benefit from a given treatment, improving choices in the background medications used, and improving the methods by which the symptoms of people with lupus are tracked and graded.
“I’ve been involved with more than thirty failed clinical trials for lupus since the 1990’s,” said Joan T. Merrill, M.D., Chief Advisor of Clinical Development at the Lupus Foundation of America and member of the Oklahoma Medical Research Foundation, and the lead author of the paper. “The heroes of our field are those who patiently re-evaluated the data from each disappointing study. Now, finally we can apply those lessons learned to give promising new treatments for lupus a fair test.”
The white paper builds upon the Lupus Foundation of America’s 2009 Lewin Report, which issued recommendations on ways to overcome the barriers that have obstructed lupus drug development. The white paper is also an outgrowth of the Foundation’s ongoing leadership in working with the FDA to advance clinical trials in lupus.
Dr. Merrill along with Susan Manzi, M.D., M.P.H., Chair of the Medicine Institute at Allegheny Health Network and Medical Director of the Lupus Foundation of America, and Victoria P. Werth, M.D., Professor of Dermatology & Medicine at the University of Pennsylvania, School of Medicine drafted the paper. As part of the research for composing the paper, they received input and guidance from nearly three dozen opinion leaders in the field of lupus including lengthy consultations with key clinical scientists from a number of biopharmaceutical companies. This represents the first time the lupus research community has come together to submit recommendations to the FDA for improving clinical trials.
“The breadth of input in this white paper clearly demonstrates that a community of leaders in the field has agreed upon a plan for improving lupus clinical trial design,” said Sandra C. Raymond, CEO of the Lupus Foundation of America. “This is a first of its kind collaboration among lupus experts that may shift the paradigm for how lupus clinical trials are conducted so that more effective treatments for this devastating disease can be developed.”
To view the “Lupus Community Panel Proposals for Optimizing Clinical Trials: 2018” white paper, visit: lupus.bmj.com/content/lupusscimed/5/1/e000258.full.pdf.]]>
Today, President Trump signed into law the Omnibus Appropriations bill, which was approved by the House of Representatives and the Senate on March 22.
The critical funding for lupus research and education programs included in the bill was made possible thanks to our advocates across the country, the Congressional Lupus Caucus co-chairs and the leaders of the House and Senate Appropriations Committees.
Help us continue the momentum
The Lupus Foundation of America’s ongoing advocacy work and the efforts of our national network of lupus activists have been critical in the fight against lupus and in victories such as the one today. Join us in the fight by becoming a lupus advocate and help us keep this momentum going.
Statement from Sandra C. Raymond, Chief Executive Officer of the Lupus Foundation of America in response to passage of the US House Appropriations Bill.
The Omnibus Appropriations bill passed by the US House of Representatives on March 22 includes increased funding for critical lupus research and education programs, including $6.5 million for the National Lupus Patient Registry at the Centers for Disease Control and Prevention (CDC) and over $37 billion for the National Institutes of Health, the single largest source of lupus research funding.
We are thrilled that Congress has responded favorably to lupus advocates by providing a $500,000 increase for the CDC’s Lupus Registry, a $3 billion increase for NIH and $5 million to continue funding for the Lupus Research Program at the Department of Defense. This funding is a huge boost to our efforts to better understand the true impact of lupus, identify who it strikes and why, speed time to diagnosis and find new treatments for the 1.5 million Americans living with lupus.
We applaud the leaders of the Congressional Lupus Caucus – Representatives Tom Rooney (R-FL), Bill Keating (D-MA), Ileana Ros-Lehtinen (R-FL), and Eddie Bernice Johnson (D-TX) – and the members of Congress who made this funding increase possible.
Thank you to our national network of lupus advocates and the thousands of people who joined together on Wednesday to send a strong message to Capitol Hill during the Foundation’s National Advocacy Summit. The increases for FY 2018 demonstrate that your efforts makes a difference. We will continue to work with Congress and the lupus community to build upon this victory.
The Omnibus Appropriations bill next will be considered by the U.S. Senate. Once final legislation has been approved by both chambers, it must then be signed into law by the president. We will update constituents on the progress of this legislation as well as our ongoing efforts to further expand programs that support our mission – to improve the quality of life for all people affected by lupus.
Inset photo: (from left to right) Lupus Foundation of America's medical director Dr. Susan Manzi joined by two Congressional Lupus Caucus Co-Chairs, Rep. Ileana Ros-Lehtinen (R-FL) and Rep. Bill Keating (D-MA) at the Foundation’s Lupus Briefing for members of Congress on Wednesday, March 21.]]>
Tracoyia Roach is a recipient of the 2017 Lupus Foundation of America Gina M. Finzi Student Summer Fellowship. After losing her mother to lupus complications, she decided to pursue a career in lupus research to better understand the genetics behind the disease.
Currently in her first year of her doctoral studies, Tracoyia is a diligent student and is dedicated to becoming an independent lupus investigator with the help of her mentor, Dr. Laurence Morel, a Professor of Pathology at the University of Florida. Their research is focused on identifying genetic pathways that are responsible for the onset of lupus.
“The Gina M. Finzi Memorial Student Summer Fellowship has helped me begin my career in lupus research and provided me with quality training as a young scientist” – Tracoyia Roach
After graduating, Tracoyia is committed to staying in the field to help advance lupus research and is applying for additional funding to support her ongoing projects. She is well on her way to becoming a scientist who is trained to make important contributions to society’s understanding of lupus and biomedical research.
Gina M. Finzi Memorial Student Summer Fellowship Program
The fellowship program aims to foster the interest among students in the areas of basic, clinical, translational, epidemiological or behavioral research relevant to lupus. Six awards will be given; one award will be in support of an underrepresented minority student, a second award will be in support of a student whose work directly impacts rural areas.
Career Development Award
The award is designed for second or third year rheumatology, nephrology and dermatology fellows in the U.S. and Canada who are interested in lupus research. In support of the Foundation’s commitment to advance pediatric research one of the two awards will be granted to a qualified applicant with a study focused on pediatric lupus research.
Novel Pilot Therapeutic Approaches in Childhood Lupus Award
On behalf of the Michael Jon Barlin Pediatric Research Program, the Novel Pilot Therapeutic Approaches in Childhood Lupus Award will provide one two-year grant award in the amount of $500,000 for a study that addresses the key issues relevant to treatment options for childhood lupus research. Applications for this award only are due on March 16th at 5pm. Please email all application materials to email@example.com.
Lupus investigators who are interested in the grant opportunities may obtain more information and links to the online applications on our site. Applications are due by April 9th, 2018 at 5PM EST.]]>
She also serves as a bilingual ambassador in her community spreading awareness about lupus. “I want everyone to know absolutely everything there is to know about lupus,” she says.
That’s because she remembers how she felt when faced with her own lupus diagnosis in 2013 at age 26. “I was scared, confused, and very emotional.”
She learned about the Foundation’s Walk to End Lupus Now® event in 2015. “The Walk day experience is simply amazing,” she says. “It’s a great way to support the cause of education and medical research so that one day we have a cure.”
To raise money for the Walk, Grace and her Walk team members came up with the idea of an annual Zumbathon, open to anyone who makes a donation to the team. A fitness program set to Latin-American pop music, Zumba is a guaranteed fun way to get moving, no special training needed. Grace’s cousin donates his time as DJ and the mayor of nearby Union City arranges the locations, as well as free water for participants. Grace is determined to see attendance at their Zumbathon grow.
To get the word out about the Zumbathon and the Walk, Grace and her team members use social media, word of mouth and put up fliers at the library and laundromats, and other local places that allow it.
The owner of the Spanish language newspaper, “El Especialito” is another valuable connection. “I’ve known him since I was a baby,” Grace says. “He ran an ad promoting the Walk in the paper’s New York edition, and that was pretty cool.”
All of her efforts throughout the year come together on Walk day—and it’s all worth it.
“What motivates me to walk is every single person suffering and fighting lupus every day,” Grace says. “Just seeing so many people come together to support one another is uplifting—it gives me more hope that we will live lupus-free one day.”
Be Powerful and join us for a Spring Walk to End Lupus Now® event! Find a walk in your community and register to start your team today.]]>
This month, we asked Sharing the Journey participants the following question:
Some nights it’s very hard to sleep depending on my day. Usually I don’t get that much time to sleep because I am always working full-time, on top of being a full-time student. It’s hard to try to maintain a balanced schedule to finish homework. Because of this, I generally only get five to six hours of sleep each night. When I was first diagnosed with Lupus, I was always stressed out, depressed, angry at everyone and everything, but then I began to listen to classical music and it would always calm me down. Now, before I go to sleep, I listen to classical music or I do meditation. These techniques have helped me immensely. Even when I am not going to sleep I will listen to classical music throughout the day and it makes me relaxed. – Kyra S.
Lupus has definitely impacted my ability to sleep well. Sleeplessness was one of the many symptoms I experienced when I was first diagnosed. To help me sleep better at night, I always try to get in bed early and I do not use my electronic devices once I am in bed. – LaTrease B.
With my busy college schedule, it's pretty difficult to get enough sleep every single night to appease my lupus. Lupus typically makes me more exhausted, so falling asleep is normally quite easy for me. However, there are days that my stress level is incredibly high and my racing mind keeps me awake; there are other days that my lupus fatigue makes me feel so bad, I can't fall asleep. In both situations, I normally combat these obstacles with the same weapons. First, I establish a nightly bedtime routine that triggers my brain into sleep mode. By reading the same book, listening to the same music or even playing the same game every night, my brain learns to connect this activity with sleep. Eventually engaging in this wind-down routine makes me drowsy. Second, I keep a notepad beside my bed to write down everything that may pester me during the night. Every time I remember something I'm scared I will forget, I put it on that notepad to check the next morning. Finally, I focus on my breathing. Your breathing patterns have the ability to slow your heart rate and consequently physically and consciously relax you. I often breath in on a count of four, hold for a count of four, release for a count of for, and then rest for a count of four before starting the cycle again. Each round, I increase the count by one aiming to finish by 10. I'm normally asleep by six or seven repetitions. – Becca M.
Lupus can definitely affect your sleep. I found that during a flare, my sleep is greatly affected. Also, the pain always seems to be worse at night. When this does happen, I really try and control the pain before getting into bed. Hot baths or showers, essential oils, and anti-inflammatories seem to help. I also use sleepy time tea before bed or take melatonin. The key for me is to have some sort of pain relief before even crawling into bed, otherwise I know I’m fighting an uphill battle. Also, if the time allows, take naps! – Roxi W.
There are numerous things that I do to help with sleep. I have figured out that my circadian rhythm is an early to bed and early to rise pattern, and this was helped out by a rooster several years ago that started crowing at 4:30 am. At the time, I had been getting up to an alarm at 6am for work. I am several years older now and I am automatically tired around 8:30 to 9pm and up by 5am. This doesn't leave much time for a nightlife, but I am fine with that. I get in a good brisk walk every morning and do weights six days a week, alternating upper and lower body. I eat a Mediterranean diet, so my largest meal is midday and smallest is late afternoon so my body is not digesting a significant amount into the evening. I turn off all electronics at least an hour or two prior to bed and settle into reading. It's not uncommon that my husband and I will watch something that is humorous as laughter helps to relax me in the evening. I give enough time for hygiene and then do some meditation in bed as I drift off to sleep. Other things that I do in the morning as I arise is hydrate and stretch first thing. – Betsy H.
A regular sleep schedule doesn’t just give you energy for the day ahead – it can also help reduce inflammation in your body. But falling asleep isn’t always easy, especially when you’re dealing with pain, fatigue, or other symptoms of lupus.
When counting sheep isn’t enough, check out "Sleep well despite lupus" for tips on catching those all-important Z’s.]]>