Dr. Costenbader is a rheumatologist who is Director of the Lupus Program at Brigham and Women’s Hospital in Boston and Professor of Medicine at Harvard Medical School. In 2009, Dr. Costenbader was the first recipient of the Lupus Foundation of America’s Mary Betty Stevens Young Investigator Prize, awarded to recognize exceptional achievements in the early part of an investigator’s career in lupus research.
The Lupus Foundation of America supports patient-focused research that improves quality of life and stimulates faster progress in efforts to develop new lupus treatments. “People living with lupus have waited long enough to have access to new effective and more tolerable therapies,” said Sandra C. Raymond, Chief Executive Office of the Foundation. “In her new leadership role, Dr. Costenbader will further expand the Foundation’s strategic partnerships with key opinion leaders in lupus around the world to increase the Foundation’s reach and growing impact in efforts to help people with lupus now.”
“Lupus is a cruel mystery requiring a comprehensive approach to address the hard questions and to create the change needed for people with lupus, sooner rather than later,” said Dr. Costenbader. “I look forward to collaborating with lupus experts around the world to support groundbreaking studies that will improve the lives of lupus patients.”
The Lupus Foundation of America was the first national nonprofit organization to support research studies in lupus. Over the past four decades, the Foundation has supported more than 400 lupus research studies conducted at more than 100 medical institutions throughout the United States. Investigators who have received early funding from the Foundation have gone on to contribute toward achieving many of the most important advances in research on lupus. Data generated by the Foundation’s early research investments have provided important pathways toward identifying people at highest risk for lupus and stopping the disease before it starts.
More information about the Foundation’s research efforts: lupus.org/research.
Emily Nguyen, 12; Alessandra Poso, 9; and Annelise Taylor Bedan, 12 told their stories of growing up with the debilitating disease, and underscored the urgent need for new treatments and cures for all those impacted by lupus.
Alessandra was diagnosed with lupus when she was 7 years old and has had to miss a significant amount of school due to doctor visits and chemotherapy treatments.
“Lupus makes me feel devastated, knowing that I have a disease with no cure,” said Alessandra Poso. “I hope that one day the cure for lupus will be found and help not just me, but the many others who suffer with lupus.”
Emily Nguyen was diagnosed when she was 8 years and has had already been through seven rounds of chemotherapy.
“I had to wear hats throughout third grade because I lost all of my hair,” said Emily Nguyen. “But that didn't stop me from doing what I love. I still played soccer, basketball and hung out with my friends and family. Even though I'm fine right now, I still have to worry about getting flares.”
Annelise Taylor Bedan was diagnosed when she was 6 years old and has become too familiar with hospitals, blood work, chemotherapy and infusions.
“Lupus constantly attacks my body,” said Annelise Taylor Bedan. “I had a stroke this summer. I’m feeling better now, but the toughest thing about living with lupus is waking up with pain.”
The Foundation is committed to improving treatment and care for children and their families, and in 2006 established the Michael Jon Barlin Pediatric Research Program, becoming the only lupus organization with a dedicated childhood lupus research agenda. As part of our commitment, we have also partnered with the Childhood Arthritis and Rheumatology Research Alliance (CARRA) to determine the key research needs in pediatric lupus. CARRA’s mission is to conduct collaborative research to prevent, treat and cure pediatric rheumatic diseases and the partnership with the Foundation helps bring this mission to a reality. To learn more about the Foundation’s pediatric lupus research efforts visit, https://www.lupus.org/pages/pediatric-lupus-research-program.]]>
Aurinia Pharmaceuticals and Dr. Richard and Michelle Glickman; the Schwab family and Piper Jaffray; and Stephen, Lisa and Shea Evans were recognized for their trailblazing work to put an end to the devastating impact lupus has on millions of families during the Lupus Foundation of America’s (Foundation) National Gala in New York City on October 11.
Lupus is a life-long autoimmune disease that can impact any organ. There is only one drug specifically developed for lupus, and many of the current treatments have been used for decades. Youth advocates living with lupus ranging in ages from 9 to 12 shared their experiences with lupus and hopes for the future, underscoring the urgent need for new treatments and cures for all those impacted by lupus.
Lupus Foundation of America Global Ambassador Julian Lennon and Whoopi Goldberg welcomed guests and opened the program for the evening. The program also highlighted the current landscape of lupus research and raised funds for a ground breaking research study using stem cells as a potential new therapy for the treatment of lupus. This is the first-of-its-kind study in the United States and marks a major milestone in lupus research.
Brooke Baldwin, Anchor at CNN Newsroom; and Dorothy Toran, National Ambassador at the Foundation and Executive in Charge of Production at Sirens Media, served as Co-Masters of Ceremonies.
“We are incredibly pleased to be celebrating the work of our honorees who are propelling lupus research forward and increasing understanding of the disease,” said Sandra C. Raymond, CEO of the Lupus Foundation of America. “These honorees provide hope for a future and further ignite our determination to put an end to the cruel mystery that is lupus.”
Aurinia Pharmaceuticals and Dr. Richard and Michelle Glickman received the National Corporate Visionary Award. Founded by founded by Dr. Glickman, Dr. Neil Solomons (Chief Medical Officer) and Michael Martin (Chief Operating Officer), Aurinia is currently developing a treatment for lupus nephritis that could drastically improve lives for lupus patients everywhere. Richard and Michelle have been staunch supporters of the Foundation working to bring greater attention to the disease and help raise the profile of lupus to encourage greater public and private investments in life-saving research.
“I am thrilled to accept this award and be honored alongside my wife Michelle and Aurinia,” said Dr. Glickman. “Lupus is a disease important to me and my wife professionally and personally and I am proud of the progress Aurinia is making to contribute to the understanding and treatment of the disease.”
Peter Schwab, his wife, Jeannette Thornton-Schwab and Piper Jaffray received The National Research Leadership Award. Peter Schwab has served on the Foundation’s National Board of Directors in multiple roles for the Foundation for 15 years, most recently as Immediate Past Chair. They have made significant contributions to the Foundation over the years and continue to work to bring greater attention and awareness to lupus in order to increase the understanding of the disease. Peter’s employer, Piper Jaffray, has had a long standing commitment to his work with the Foundation and is a leader in corporate philanthropy.
“I have been able to witness firsthand the work the Lupus Foundation of America does and how it helps the multitudes of men, women and children who are suffering from lupus,” said Peter Schwab. “With the public’s help, the Foundation can continue to support cutting-edge research, raise the profile of lupus, and encourage greater public and private investments in life-saving research, education, and advocacy and support services.”
The Foundation presented the Barlin Family Award for National Advocacy to Stephen, Lisa and Shea Evans. The Evans family has raised more than $500,000 to ensure funding for research and support for people with lupus and their families.
“We are halfway to our personal goal of raising $1 million for lupus research and education programs and we will not rest until we get there. And when we get there, we will re-set the clock and begin again until we find a way to put an end to this cruel disease, too many people like my daughter are counting on all of us,” said Stephen Evans.
Special guest, Ian Harding, star of Pretty Little Liars and the 2016 recipient of the Barlin Award, was in attendance and presented the award to the Evans family alongside Wayne and Judith Barlin. The award was established by the Barlin family in honor of their son, Michael Jon Barlin who passed away from lupus at the age of 24.
The program closed with a performance by Mike DelGuidice celebrating the music of Billy Joel. DelGuidice is one of Long Island’s most celebrated performers and has been performing to sold out audiences throughout the United States for 27 years.
The Foundation thanks its generous supporters and sponsors including: Burlington Stores, Pfizer Inc., Aurinia Pharmaceuticals, Greenberg Traurig LLP and Piper Jaffray. The Gala raises critically needed funds to advance the Foundation’s mission and its comprehensive programs of research, education, and advocacy. To learn more or make a donation, visit www.lupus.org/gala.
View more exclusive behind-the-scenes photos from the Gala on our Facebook page HERE. Additionally, Whoopi Goldberg continued to further the lupus awareness conversation on The View.
This month, we asked Sharing the Journey participants the following question:
I enjoy reading books to help improve my concentration. I feel like it keeps the mind stimulated and active. I'll also play puzzle games on my phone such as Sudoku, puzzle block and mystery games. I think that there are simple ways to help us deal with these symptoms in everyday life; we just have to figure out what works best for us. If you're not into reading or games then I suggest trying an exercise. It doesn't have to be drastic. It could be as light as yoga or swimming. I’ve found that cooking small meals and following recipes help. I noticed that along with my concentration my memory is not in the best shape that it used to be. I'll try to read the recipe a couple of times and then see how much I can remember, hoping to remember a little more each time. I hope this helps someone. – Hilnecia L.
I keep calendars with color coding for each member in my family with each of their activities. I also put everything in my phone, and have a small weekly white board that I use. This way I can double and triple check if need be. Even with all these reminders I still have forgetful moments. I feel like sometimes it is hard to pull forward a past memory or even find the “right word” at times. A lot of people think it’s silly and say “you’re too young for that” because they don’t realize the effect lupus has on the brain. Most of the time I try and brush it off, but inside it scares me to think that I may not be completely clear at times. – Roxi A.
Brain fog has become a serious issue I've had to face being a law student. Knowing that I already have this condition that makes me get confused or forget things, I have to really enforce my reminder/ memory enforcing skills. For everyday life, I have a planner which I use religiously, as well as post-it notes and phone reminders. I often tell someone else something that I need to remember so that they can remind me. Brain fog as it relates to school is a whole other issue, which I have learned to manage through study aids and skills such as flashcards and white-board repetition. – Kayla B.
Every time my lupus flares, I find that my odd symptoms (those apart from the usual exhaustion, joint swelling, and mouth sores) such as vision disturbances and brain fog tend to surface. Brain fog especially frustrates me because it makes it difficult for me to focus and articulate my ideas at school. Through long nights of struggling to write papers to embarrassing moments in class when I just couldn't find the right words to answer my professor's question, I developed several strategies to help me cope with this symptom. First, I always try to prioritize sleep. Sleep is important for regular cognitive functions, so it makes sense that sleep would have an impact on the severity of brain fog resulting from lupus. More sleep equals clearer, sounder, and quicker thinking. Second, I try to write lists as often as I can. It's easy to forget things when brain fog sets in, so I try to set alarms or make to do lists to help me remember easy tasks that may slip my mind later. Even in class, I try to write down a few talking points before I raise my hand to answer a question so that I will remember the point I wanted to make. Overall, though, I think the most important thing you can do when brain fog sets in, is to give yourself grace. It's okay that you may forget things a few times. When you look around at others and see their lifestyle, it is easy to beat yourself up for not being as quick or energetic as them. It is so important to forgive yourself for your mistakes. It's not your fault that you have lupus, and you are doing the best you can to deal with the symptoms. – Becca M.
Brain fog is an extremely uncomfortable and frustrating feeling. It impacted me the most through college as I was just being diagnosed, and I was untreated and unsure of the implications of my disease. It angered me to never be able to remember things for exams, when I spent so much of my time trying to gain as much knowledge as I can. I didn't want to admit lupus was doing this to me. However, some good came out of it! I ended up setting aside "me time" during the day, where before, I never gave my mind a break. I reflected on my day, listened to calming music, and learned to get plenty of sleep; which helped my overall health as well as my mental health. Also, letting those that are close to you know what you are dealing with will help them be patient when you're having a bad day. It is important to be proactive and vocal. – Brittany W.
To me, the best thing to do when dealing with brain fog is to not think too hard about it. I know that sounds counter intuitive, but when you freak out about it, for me personally, that makes it worse. If I try to calm down and not think too hard, I usually get the clarity I need. If I try or think too hard, it makes it worse. – Leslie R.
I have gotten creative and use intention and breath to send added oxygen and blood to my brain. I also exercise daily, which for me is walking. This is a wonderful time of year with the fall colors and the frost starting. I also do weights which, for me are at home, so I can play my own choice of music with that. And I focus on self-care which also adds to keeping me more alert and aware. All of these things help. I do prayers and send energy to the places of my body that need extra healing energy as well. – Betsy H.
Between 20 percent and 60 percent of people with lupus notice changes to their cognitive function—so if you are having trouble concentrating or struggling with memory issues, it’s not just you. And while lupus brain fog can make completing tasks more challenging, there are lots of things you can do to adapt:
Check out coping with the cognitive symptoms of lupus to learn more about how you can take charge of your lupus brain fog.]]>
Lupus nephritis (LN), the term used when lupus affects the kidneys, is one of the most serious and potentially life-threatening complications of lupus. Up to 60 percent of people with lupus and up to 80 percent of children with the disease will have kidney involvement.
The Lupus Foundation of America has placed a high priority on supporting research to address lupus nephritis. According to Dr. Brad Rovin, Director of the Division of Nephrology in the Department of Medicine at the Ohio State University Wexner Medical Center, lupus nephritis is more prevalent and often more severe in African Americans and Hispanics than in Caucasians.
“Studies have shown that minority women that develop lupus at a younger age tend to have more serious complications,” Dr. Rovin reported.
As part of the Foundation’s lupus nephritis research focus, special attention is given to lupus nephritis in children and teens. Dr. Rovin, who serves on the Foundation’s Medical-Scientific Advisory Council, says this emphasis is helping to address an urgent issue for people living with lupus. “Lupus nephritis may be more frequent in children with lupus. The severity of the nephritis in children may be higher than in adult patients and therefore needs to be managed and brought under control quickly to avoid going on to chronic kidney disease or end-stage renal failure.”
The Lupus Foundation of America, through its Michael Jon Barlin Pediatric Lupus Research Program, has funded important studies to develop better ways to treat and manage lupus in children and teens. Dr. Emily von Scheven, director of the University of California, San Francisco pediatric rheumatology program, has received Foundation funding for a large study that involved pediatric lupus patients treated at several medical centers around the country.
Dr. von Scheven and her collaborators have developed a new approach for treating young patients with lupus nephritis. “It involves taking advantage of the data from all patients who are treated for lupus nephritis to compare patients with different treatments. This approach enables physicians to learn what is the best treatment in children and not only what drugs work best but also which have the least side effects.”
Dr. Kathleen Sullivan, the division chief of allergy and immunology at the Children's Hospital of Philadelphia, has received Foundation funding for a five-year study to facilitate the development of non-invasive diagnostic tools for pediatric lupus nephritis. Sullivan is working to develop a simple test that children and teens can use at home to monitor their lupus disease activity.
Dr. Brad Rovin indicates this test could be a valuable tool to help manage this potentially fatal complication of lupus.
“Once a person has lupus, it is very important to monitor for the development of kidney involvement. Data suggest that identifying nephritis early and treating it quickly increases the likelihood of response and decreases the likelihood of renal failure. Home monitoring on a regular basis could show changes in urine protein and suggest earlier that a lupus nephritis flare is beginning.”
Foundation-funded research in lupus nephritis also has led to identifying relationships of gene expression in nephritis and understanding the risk factors that could determine how quickly a person with lupus might develop kidney failure.
All of this important research data can help improve care for people with lupus and ultimately prevent kidney failure. Stopping lupus from damaging the kidneys means people like Selena Gomez and others might be able to avoid the difficult and potentially life-changing challenges of undergoing dialysis or kidney transplantation.
Learn more about the Foundation’s research efforts at lupus.org/research and then join the fight to bring an end to lupus now by making a contribution to the Lupus Foundation of America’s research efforts.
Paint, wine glasses, and a fun loving group of people - what do you get when you put these things together? The perfect ingredients for a fantastic Make Your Mark fundraiser.
I was diagnosed with lupus at 14 after experiencing years of symptoms – feeling completely fatigued after being in the sun, sleeping for hours each day and then one night I was in so much pain that I couldn’t even lie on my back. After running blood work, the doctor said I had lupus. By the time I received my diagnosis I was in complete kidney failure and needed a transplant. The time from diagnosis to transplant was tough and is a lot for a kid to go through. I’ve been so lucky to have the support of my wonderful network of family and friends and have been able to live a full life despite my diagnosis.
I want to do my part to support research, education and services that help improve the quality of life for all people affected by lupus.
I’ve been a part of the Walk to End Lupus Now™ program for years, which I love, but after seeing a post on the Lupus Foundation of America’s Facebook page, I thought I could expand my fundraising efforts by putting on a Make Your Mark fundraiser. I had recently gone to a paint night fundraiser put on by a friend and wanted to try putting on one of my own.
To make the event a success, I was very proactive about promoting it on Facebook and asking my friends and family to share it on their pages as well. In order to really pump up my fundraising effort, I reached out to a restaurant about them donating a percentage of proceeds they received on the night of the event – hot tip: MANY restaurants or business do this, so research those in your area and reach out to them! I also knew that there would be some people who wanted to attend, but wouldn’t be able to so I encouraged them to donate ahead of the event, which resulted in quite a few donations
Finally, I put together gift baskets to raffle off at the event in order to raise more – one local business even donated an entire basket. This was a great way to raise additional funds once people were in the door.
The idea of putting on a fundraiser scared me initially, but I decided I just had to go for it and focus on why I was doing it – to help support the critical programs that help others with lupus. Having access to those programs made a huge impact on me and I know they will help others affected by lupus, which is why I felt so compelled to do more.
Three organizations – the Lupus and Allied Diseases Association, , the Lupus Foundation of America, and the Lupus Research Alliance – organized the meeting as part of the FDA’s externally-led Patient-Focused Drug Development (PFDD) Initiative. The PFDD was created by the FDA to allow regulators to better understand the perspectives of people with diseases such as lupus so they can better assess the risks and benefits of drugs under review.
The meeting featured two panels of people with lupus and family members and speakers that included clinicians, representatives from the FDA, and a community representative. Audience members also provided input throughout the day on symptoms and treatments. Dr. Anca Askanase, director of the Lupus Center at Columbia University Medical Center described the unpredictability and individuality of lupus with symptoms ranging from extremely debilitating pain and fatigue to serious organ damage. She detailed the inadequate treatments for lupus, describing their varying effectiveness and challenging side effects.
Director of FDA’s Center for Drug Evaluation and Research Dr. Janet Woodcock urged participants to share the burdens of treatment as well as the burden of the disease. Participants answered her request with poignant accounts of how lupus and lack of symptom relief has robbed them of dreams for school, careers, and children.
“I no longer had control over my life,” said one panelist, while another observed, “Every day I feel I’m putting on a show when all I want to do is cry.” A former nurse said she finds lupus fog is the worst impact on her life and profession, affecting her memory and ability to think. Of the numerous symptoms mentioned throughout the day, extreme fatigue was identified by nearly all as having the greatest impact on their day-to-day life. Virtually all participants shared how friends, family, and colleagues often think they’re “faking” because lupus is an “invisible” disease without obvious symptoms.
Meeting participants also spoke about the difficulties of managing treatment for this heterogeneous and unpredictable disease, including the side effects of many medications. As one attendee said, “Treatments are short-term decisions that have long-term implications. We must weigh the risks and benefits with little information about long-term risks to guide our decision.” Another woman, who has been living with lupus for decades, voiced “What’s really upsetting is there’s not much more to offer today than there was to me fifty years ago…I’m very excited that this [meeting] is finally taking place, where all the lupus organizations are together, and put together, you can do something positive.”
Throughout the meeting, attendees demonstrated their resilience in the face of lupus and expressed the urgent need to develop new treatments. As speaker and lupus community representative Kathleen A. Arntsen noted, “Today marks a new era in drug development for lupus. It is imperative that the next generation of people with lupus have a better quality of life and the opportunity to pursue their dreams. After all, lupus ends with us.”
Next step – a comprehensive Lupus: Patient Voices report will be sent to the FDA summarizing all the feedback from the meeting, online participation, and surveys from more than 2,000 people with lupus. We welcome your comments about your experiences with lupus and what you would like to see in future treatments. Comments submitted via email to info@lupusPFDD.org by October 6 will be used to inform the report. Additional information about the meeting can be found at https://lupuspfdd.org/meeting/.
To view the full meeting or individual sessions, please visit our Youtube channel.]]>
The Lupus Patient-Focused Drug Development (PFDD) Meeting, one of the first sessions to be accepted by the FDA under the agency’s externally-led PFDD meeting initiative, will be held September 25 from 10:00 a.m. to 4:00 p.m. at the College Park Marriott Hotel & Conference Center in Hyattsville, Maryland.
The meeting will enable persons with lupus to share their personal experiences of life with the disease, how it impacts them on a daily basis, their approaches to managing the condition, and what they desire most in future lupus therapies.
“For many decades, individuals with lupus and their representatives have endeavored to make their voices heard on lupus therapy development. Now, because of the FDA’s PFDD model, our collaborative initiative will give these important stakeholders the unprecedented opportunity to provide their personal input on lupus as experts in their own disease,” said Kathleen A. Arntsen, Lupus and Allied Diseases Association President and CEO. “This will ultimately promote drug development for this debilitating condition, and that is both momentous and celebratory for all in the lupus community.”
For more than two years, the three convening organizations have worked collaboratively to develop a high-impact agenda for the PFDD meeting. This includes two panels of persons with lupus who will share their unique experiences about life with this disease and their views on treatments to facilitate the meeting. Audience members with lupus will also have an opportunity to provide comments and respond to polling questions throughout the meeting. This direct patient perspective will allow leaders from the FDA to understand what it is like to walk in the shoes of those impacted by the disease and what the lupus community wants to see most in new therapies, including levels of risk people are willing to accept in exchange for certain benefits.
Nearly 300 people, including more than 120 people with lupus or their representatives, will attend the meeting in person, and another 300 will participate through a live webcast that will be accessible on the Lupus PFDD Meeting website: https://lupuspfdd.org.
“This meeting is a tremendous opportunity for people with lupus to share how the disease impacts their lives and what types of treatments make the most difference,” said Sandra C. Raymond, CEO of the Lupus Foundation of America. “The FDA, the pharmaceutical industry and those who treat people with lupus need to hear these voices and understand the urgent need to improve the standard of care for people living with this disease and deliver better treatments to improve their quality of life as fast as possible.”
Staff from the FDA who will be presenting at the meeting include Dr. Janet Woodcock, Director for the Center for Drug Evaluation and Research (CDER), as well as Pujita Vaidya, also from CDER, and Dr. Nikolay Nikolov, with the Division of Pulmonary, Allergy, and Rheumatology Products. In addition, several other FDA staff and representatives from the National Institutes of Health will be at the meeting.
“We are very pleased that so many senior FDA leaders will be joining this meeting. This speaks volumes about the agency’s interest in and commitment to lupus and to gaining the patient perspective,” said Kenneth M. Farber, President and CEO of the Lupus Research Alliance. “That means our community’s voice will be heard by key decision leaders who can make sure that what’s important to people with lupus is considered in the drug development and review process.”
Media interested in attending the meeting should contact the Lupus PFDD Meeting planning team at email@example.com.
Mike Donnelly, Communications Director
Lupus Foundation of America
This month, we asked Sharing the Journey participants the following question:
I was diagnosed with lupus at 11 years old, and transitioned to adult care at 21 years old. The transition was a very scary time for me, as I had become very accustomed to my pediatric crew, and feared that my adult care clinic would not take the time to get to know me as well as the pediatric clinic. The transition turned out to be much better than I expected. I like the fact that I am able to express my feelings, concerns, conditions, etc. without being second guessed, since now I'm not thought of as a child. I like the fact that the doctors see me as an adult, as opposed to that little girl they remember when I was first diagnosed. However, I don't think I will ever be able to get that love and comfort back that was provided by my pediatric clinic, and some of that probably stems from the fact that they watched me heal. I overcame the challenges that came along with transitioning by explaining to my adult care clinic what I expected from them. Even in the pediatric clinic I was already responsible for all of my health care needs and did not rely on a parent or guardian- so that wasn't a challenge I had to face. I am very blunt with my adult care doctors. They see so many patients regularly, and each patient has a different need, personality, and expectation. By sharing my concerns and expectations with them, they have been able to go above and beyond to make me feel comfortable going to the adult clinic for the past five years. – Kayla B.
I'm a young adult with lupus and was diagnosed at 14, but experienced symptoms since 13. I found that having a mentor really helped me. – Jalesa
The hardest part of transitioning from pediatric to adult lupus care was definitely learning to deal with my doctor all by myself. Suddenly, it was my responsibility to schedule appointments, check my blood work and pick up my prescriptions. One strategy I developed while learning to visit doctors alone was making a list of symptoms. Every time I go to my doctor, when the nurse leaves after taking my vitals and before the doctor comes in, I jot down a list of my concerns, questions and worrisome symptoms. I also suggest bringing at least one parent with you to your appointments, especially if you have a lot to talk to your doctor about or if you have some serious concerns. Also, I appreciate that my doctor treats pediatric and adult patients, because I did not have to transfer doctors when I turned 18. I think finding a doctor who treats both pediatric and adult patients is very important if you are diagnosed with lupus as a child. – Becca M.
We know that learning to take on more responsibility for your own health care as you get older can be challenging. There are so many important things to remember, and making sure you’re on top of everything when it comes to managing your lupus can feel overwhelming at first. But with some help from these tips, you’ll feel confident as you make the transition from pediatric to adult care.
To make sure you are prepared for each doctor’s appointment...
If you’re about to head off to college…
Este 16 de septiembre al 16 de octubre es el Mes Nacional de la Herencia Hispana-un tiempo para celebrar las culturas, historias y contribuciones de aquellos cuyos antepasados vinieron de México, España, el Caribe y América Central y del Sur. En la Fundación Lupus de América, es también un tiempo para que examinemos cómo el lupus puede afectar a los hispanos / latinos. Cuanto más sepa, mejor será capaz de manejar y enfrentarse a la enfermedad. El Centro Nacional de Recursos sobre el Lupus tiene muchos recursos para ayudarle, en inglés y en español.
A continuación les presentamos una variedad amplia de recursos en español:
¿Tiene preguntas sobre el lupus? Póngase en contacto con nuestros educadores de salud]]>
When his cholesterol levels came back very low, his doctor did some additional testing and he was then referred to a rheumatologist who concluded that he had lupus. Given the typical demographics of people with lupus, his doctor told him that it was uncommon for a white man in his 50’s to develop this life-altering disease.
“Dealing with lupus has been really tough,” said Phil. “I call lupus a ‘tornado’ because it leaves destruction wherever it touches down. Some days are good and others I can’t even get out of bed because every muscle aches.”
Immediately after Phil was diagnosed, his daughter Pam became his biggest advocate. She spent countless hours researching and understanding more about the disease, and then became very involved in Walk to End Lupus Now™ events – she now serves as the Chair of the Chicago Walk. Having the support of his family and participating in the Walks together has made a huge impact on his life.
“The Walk program has done wonders for me,” said Phil. “I didn’t know what to expect the first time I attended one, but I immediately felt connected to the Walkers who were there to show support for their loved ones.”
For Phil, one of the most challenging parts of having lupus was the feeling of isolation and loneliness. Over time, he’s realized that you can’t control what life deals you, but you can control how you respond. Getting involved with the Lupus Foundation of America’s Walk program and feeling the comradery that comes with participating in these events has given Phil a feeling of hope, something he had been searching for ever since his initial diagnosis.
“I may be a rare case, but attending the Walk made me realize that I’m not alone,” said Phil. “I’ve come to realize that there is no shame in being sick and you just do the best you can with what you have.”
Find a Walk to End Lupus Now™ event in your area.]]>
The analyses also show that lupus-related kidney disease (lupus nephritis) — a potentially fatal complication — appears to be more common among non-Hispanic Asians and Hispanics (of any race) compared with non-Hispanic Whites.
These are the first population-based registries in the U.S. with a sufficient number of Asians and Hispanics to measure the incidence and prevalence of diagnosed systemic lupus erythematosus (lupus).
Data from these registries also confirmed an increase in lupus diagnoses among African American women, underscoring health disparities by race and ethnicity identified through previous population-based studies. Both analyses were published in the journal, Arthritis & Rheumatology.
These just-released studies were led by Peter Izmirly, MD, Assistant Professor of Medicine at the NYU School of Medicine and Maria Dall’Era, MD, Professor of Medicine, Director of the Lupus Clinic and Director of the Rheumatology Clinical Research Center at the University of California, San Francisco.
“The population data from this Manhattan Lupus Surveillance Program, which includes Asians and Hispanics, groups where data are limited, substantiates our clinical impressions that more non-Whites have lupus than Whites, but they also have a higher burden of lupus manifestations,” said Dr. Izmirly. “Based on our data, 50 percent of non-White cases developed lupus nephritis, one of the most serious and disabling manifestations of the disease, compared with 25 percent of Whites.”
“The California Lupus Surveillance Project confirmed striking racial and ethnic disparities in the incidence and prevalence of lupus with the highest burden of disease in Black women, followed by Hispanic, Asian, and White women,” said Dr. Dall’Era. “With a substantial number of Asian and Hispanic patients in San Francisco County, we were able to determine credible estimates of disease burden in these understudied populations.”
This research has shed further light on the variability of this disease and the need to understand the biology better, said Dr. Gary Gilkeson, Professor of Medicine at the Medical University of South Carolina and chair of the Lupus Foundation of America Medical-Scientific Advisory Council. “A one-size fits all approach to research in lupus will not work. This study shows us that.”
Lupus is a very complex disease and there are challenges associated with capturing all cases of lupus within a specified geographic region that may be managed across a broad spectrum of physicians and medical specialists. Consequently, not all providers that may have had patients with lupus participated in the registry and complete data for every patient was not available for all cases reviewed, resulting in possible underestimation.
“There is no one laboratory test that can be used to diagnose lupus, which makes it a challenging disease to understand,” said Hilary Parton, MLSP Principal Investigator at the NYC Department of Health and Mental Hygiene. “Our work on this registry has drawn from a variety of sources to provide a better understanding of lupus across racial and ethnic groups.”
The Manhattan and San Francisco registries are part of the National Lupus Patient Registries supported by CDC. “We are working to learn more about lupus through our follow-up studies of affected women and men,” said Charles G. Helmick, MD, a medical epidemiologist with CDC. “We hope these studies will result in better interventions for those with lupus.”
For more details, you can access the abstracts online here:
The Manhattan Lupus Surveillance Program
The California Lupus Surveillance Project
Sandra C. Raymond, Chief Executive Officer of the Foundation, began the stakeholders’ presentations by providing an overview of the Foundation’s longstanding efforts to establish a lupus-specific program at the DoD, which already has provided nearly $20 million in funding for lupus research.
During the morning session, lupus stakeholders presented their recommendations for the Lupus Research Program’s priorities. The Foundation presented five recommendations including validation of predictive biomarkers, which would help identify people at risk for developing lupus, and studies to better understand the heterogeneity of lupus, which will benefit clinical research studies in lupus.
Funding for lupus research at the DoD has been a priority for the Foundation for more than a decade and the Foundation’s advocacy has helped make the program possible. After launching a campaign to create a lupus program at DoD in the early 2000’s, the Foundation:
The Foundation’s advocacy efforts were rewarded when the President formally signed into law the legislation creating the Lupus Research Program earlier this year.
The Lupus Research Program guarantees that DoD funds not only are dedicated to lupus research, but also are prioritized to fund the most important areas of lupus research which can have the most immediate impacts on patient care, and provides direction for how those funds are spent – how the dollars can make the most difference as soon as possible for people living with lupus.
Since 2005, at least 20 lupus research studies have been funded through the DoD CDMRP. These studies have contributed toward our understanding of the causes and progression of lupus, including one study that led to the commercialization of the first new confirmatory diagnostic test for lupus.
The Foundation is seeking to double congressional appropriations for the program in the next fiscal years’ budget.
Cindy Coney, lupus spokesperson, patient advocate and former chair of the Foundation’s board of directors also serves on the programmatic committee. Cindy presented details about her personal battles with lupus and explained how lupus has impacted not only herself but her spouse and children. Cindy described the desire of all people with lupus to have available therapies that can put lupus into permanent remission and allow them to return to the quality of life they had before developing lupus.
Two of the Foundation’s medical advisors are serving on the programmatic panel, which sets the direction for the programs and helps to make funding decisions. They include Dr. Gary Gilkeson, Professor of Medicine and Associate Dean for Faculty Affairs and Faculty Development at the Medical University of South Carolina. Dr. Gilkeson also chairs the Foundations Medical-Scientific Advisory Council. The panel also includes Dr. Susan Manzi, Chair, Department of Medicine at the Allegheny Health Network in Pittsburgh, who serves as the Foundation’s medical director.
Representatives of the Foundation stressed that the program must focus on research that can make the biggest impact on those living with lupus as soon as possible and that it should not simply mimic programs conducted by the National Institutes of Health (NIH).
The DoD will issue a ‘request for proposals,’ in October. Following a series of peer-reviews of the proposals, the DoD expects to announce the program’s first lupus research grant awards sometime in April of 2018.]]>
One of the cruelest aspects of lupus is the isolation it brings – days when you’re so fatigued you can’t leave the house, people not understanding how sick you really are because you “don’t look sick” and the constant uncertainty it brings to everyday life.
For years, our Health Educators have received feedback from people with lupus about wanting a place where they can connect with others and receive support without having to leave their homes. We’ve been listening.
On August 29, in partnership with Inspire, a leading social network for health support communities, we launched LupusConnect – an online platform where you can engage with others affected by lupus, 24/7 from around the world.
"We’re so excited to share this resource and provide you with a place to foster discussions, build relationships and receive the support that we know you find to be very valuable."
LupusConnect is similar to a social media platform, but focused specifically on your health. We know lupus often makes it difficult to get out of bed let alone leave your house for a support group, but these are the times you need your community the most. LupusConnect offers you a safe place to express your fears, frustrations and hopes with people who know and understand lupus firsthand.
When you join LupusConnect, you can share health information and support without regard to time, location, background or status. You can also personalize your profile (sharing as much or as little as you like), post questions or concerns within specified topics, receive answers and tips from other members, follow posts that interest you, engage in a group discussion or direct message other members – it’s your community!
While I, along with other Lupus Foundation of America Health Educators, will be a part of the community and available to answer questions, it will be run primarily by you – those who are looking to connect with others impacted by lupus. We encourage you and all members of this community to pull from your own experiences and share practical tips for daily living as well as resources that you have found useful.
LupusConnect can be accessed at LupusConnect.Inspire.com or through the National Resource Center on Lupus. After registering, you’ll receive a brief tutorial on how to navigate the site and then you’ll be ready to connect! If at any point you have questions or concerns, you can reach out to a community leader to guide you.
We’re so excited to share this resource and provide you with a place to foster discussions, build relationships and receive the support that we know you find to be very valuable.
I hope to see you on LupusConnect soon!]]>
LupusConnect is an easy-to-use, online platform that encourages its community members to ask questions, reply to posts and read about others' experiences in a safe and comforting community. It can be accessed directly at LupusConnect.Inspire.com, or through the National Resource Center on Lupus.
Research concluded last year by the Lupus Foundation of America showed that the majority of people impacted by lupus are looking for social support and assistance coping with this disease. Specifically, they are looking for a resource where they can connect online with other people living with lupus. Based on this input and conversations with constituents, the Lupus Foundation of America partnered with Inspire to leverage its social health network and build an online community that brings together people affected by lupus to share their stories and learn from the experiences of other people impacted by this devastating and life-altering disease.
“No matter how isolated lupus can make people feel, LupusConnect offers people the opportunity to express their fears, frustrations, and hopes with others who understand lupus firsthand,” said Sandra C. Raymond, Lupus Foundation of America CEO. “We are excited to partner with Inspire and to continue our commitment to providing people impacted by lupus with access to high-quality resources and support services.”
People affected by lupus from around the globe are invited to join LupusConnect at no charge. Once someone signs-up to be a member, they will experience a positive and welcoming environment with 24/7 access to the community. Discussions cover a wide array of lupus-related topics, and include posts by members offering practical tips and resources that they have found useful for daily living with lupus. Members also have the ability to personalize their profile, follow specific posts of interest, engage in group discussions or direct messaging of members, and can add others as friends.
“In my experience, I’ve found that no matter what I'm going through with lupus, physically or emotionally, chances are that someone online has also gone through it,” said Joanna Mechlinski, who was diagnosed with lupus in 2002. “Within moments, I can connect with people who can give me advice or just empathize in a way that most healthy people can't. With the launch of this new lupus online community, I hope to be able to make some new friends who understand what I'm going through.”
With more than 100 national patient advocacy organization partnerships and over one million members, Inspire provides valuable experience in the social healthcare space and offers an authentic platform for members to engage with one another.
“We are thrilled to partner with the Lupus Foundation of America, as it’s the leading national voluntary health organization for lupus,” said Inspire CEO Brian Loew. “Together, we have built a powerful social support platform designed specifically for people impacted by lupus. We are proud that through LupusConnect, we are supporting the Foundation’s efforts of advancing lupus research, and expanding resources and support for patients.”
About the Lupus Foundation of America
The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, we lead the fight to improve the quality of life for all people affected by lupus. Learn more about the Lupus Foundation of America at lupus.org.
Inspire (www.Inspire.com) is the largest patient engagement platform in the United States. Partnering with over 100 organizations including the American Lung Association, Genetic Alliance, National Psoriasis Foundation, Ovarian Cancer Research Fund Alliance, and the Arthritis Foundation, Inspire creates and manages support communities for more than one million patients and caregivers, and helps industry connect to members for the purpose of clinical research, market research, and engagement.
Mike Donnelly, Communications Director
Lupus Foundation of America
John Novack, Communications Director
As an adult, Kevin has been able to move beyond the anger and pain he carried during his youth, and now channels that energy into something productive – putting an end to lupus. He’s become a resource in his community for those who have been diagnosed with lupus and their loved ones who are beginning the challenging journey with the disease.
“I stopped and asked myself how I could raise money and awareness to make sure that nobody else has to lose their mom. I’ve leveraged all of my networks to help spread the word,” said Kevin.
Kevin first heard of the Walk to End Lupus Now® Chicago in 2015 and immediately knew he wanted to get involved. Within 24 hours of registering for the event, he had already raised $1,000. He believes that his story resonated so strongly with people because he was candid about his experience and it came from his heart.
“I felt such love and support when I started fundraising and sharing my story. Seeing friends and family across the country talk and donate – some people I didn’t even know, it really made me feel like I was making a difference.” --Kevin Davis
The first time Kevin attended the Walk, he said it felt like going to a family reunion, except it was with people he hadn’t met just yet.
“The walk is an incredible experience and you’re surrounded by people working toward a common cause,” said Kevin. “It’s a wonderful way to get people in the community connected and talking about lupus.”
Find a Walk to End Lupus Now event in your area.
This month, we asked Sharing the Journey participants the following question:
I get my social and emotional support from my boyfriend and his mother. The two of them put forth much effort to ensure that I rest, eat when and how I need to eat, and listen to me when I need someone to talk to. This helps me tremendously because I know that if something comes up I have someone that I can lean on. If I need to stay in bed all day, there is someone there that can handle the things at home. They encourage me, motivate me, and show daily how proud they are of me, and that drives me. I really do not know what I'd do without them. – Kayla B.
My family and friends are my essential people. This has always been the case. However, I have also found much needed support in "chronic friends" that I have met online. These relationships have been cultivated, and I am lucky to have met many of them in person. It is sometimes difficult to understand how people that started out as strangers have become so instrumental in helping me get through illness. However, they understand it firsthand. I even have a group text with several of them. When I found out I needed surgery, aside from my immediate family, they are the first ones I told. "Hey guys, I'm going to be titanium, too!" – Leslie R.
Finding a solid support system is so essential, but sometimes difficult to do. With a disease like lupus, most people do not understand the enormity of symptoms you go through on a daily basis because you “look normal.” I have also found that I am my own worst enemy when it comes to opening up about my symptoms and asking for help. I get tired of explaining what lupus is or fear that people will just be annoyed with the amount of complaining I could actually do. Over the years, I have found that my husband is my best support. Living with me day in and day out, and seeing what I go through, he has perspective. As my kids age, they too know when mom is not feeling good, and when they need to help out a little more. I also have a couple good friends that I am able to vent to with no limit, they offer emotional support in a way my immediate family cannot. My circle of support is small, but very crucial when times get tough, and I appreciate every one of them for lifting me up. – Roxi A.
I get my emotional support from my entire family. All of them are my support team. I also receive emotional support from my rheumatologist. She is my life saver. Their support encourages me to do my best and keep up with my daily routine, in order to prevent lupus flares. – LaTrease B.
I would definitely say my biggest emotional support is my mom. She was diagnosed with lupus before I was, so she initially taught me how to handle the disease day-to-day and warned me about things that could be dangerous triggers. She is still my rock and emotional support when the going gets tough and I really love sharing my feelings and pains with her because I know she gets it. Besides my mom, I have a close knit group of friends at school who share my Christian beliefs and are a constant source of help and encouragement. I like having friends who don't suffer from a chronic illness because they help me to look beyond my disease at other things life has to offer. They are also very sensitive to my physical well-being and will often encourage me, even when I don't want to hear it, to rest and take a break. – Becca M.
I would say that my family and friends are my support team. They are great in helping me get through tough times when I am worried about a hard situation. It is always helpful to have people you can count on when you're unsure about a situation. I am lucky to have them because I would not be able to go through this journey alone. – Kylie K.
At this point, most of my human support comes for my spouse and places where I volunteer. A lot of the other support comes internally as I tend to be more internally guided at this time. I certainly love being around people, but am fully nourished by giving at this time. I have struggled with the medical world so much, it seems that I am primarily guided there and I have had to stay very clear with what is happening with my own body so I can report ahead of time as early as possible what’s going on with my lupus. I also have two siblings that I have strong relationships with and can get in touch with at any time and feel a totally open connection with. There are a few other essential people in my support system including a dear friend I met in the mid 80's who I have stayed connected with even when I moved, as we have remained very close and continue to see each other often. I have also established a spiritual community here which is not a very deep one, but there are several folks I feel connected with and several who I have done some healing work with and I also do some work with homeless families through that group which is a nice connection for me. I am also still connected with folks that I was around back in Madison where I was first diagnosed though that is not as strong a connection as it used to be. – Betsy H.
When you are first diagnosed with lupus, it may be hard to maintain all your old friendships—but the ones worth keeping may become even closer. Your real friends are the ones who will offer to help you out in little ways, listen to you when you talk about your lupus, and understand when you need to stay home.
Check out Best friends: How close friendships help with coping for stories about how real people with lupus find support from their friends.]]>
Danica raised funds and ran with the goal of raising awareness for lupus, since her family was not aware of the disease until her sister's diagnosis.
Erica spent most of her young life in and out of hospitals as doctors tried to diagnosis her illness. In October 2016, Erica suffered severe chest pain from an infection and the next month, she went into cardiac arrest and was put on life support. She was taken off of life support on November 25, shortly after being diagnosed with lupus.
When her family was told that she had lupus, they realized the importance of raising awareness and educating people so that they can recognize the signs and symptoms earlier and prevent serious health complications.
“It was devastating to know that my sister had lupus and we never even knew about the disease. So much of her pain and suffering could have been prevented if we had been aware of the signs and symptoms of lupus,” said Danica.
The opportunity to get involved in the community through training and racing in the recent Half Marathon became part of the healing process for Danica and Ashley, who were not runners before training started. In fact, Danica had never run more than five miles. She describes the experience as ‘emotionally staggering’ to be able to run for people who cannot participate. Danica felt her sister’s presence with her the day of the race, and said that she could not have gotten through the experience without thinking of her all day.
“Erica was fiery and feisty, she was one of the greatest people I have ever known – She was truly one of a kind and life feels very empty without her,” said Danica.
The race also gave Danica and Ashley an opportunity to feel truly connected to the lupus community. They realized that they were not alone, participating with several other people who have been devastated by the disease. Team Make Your Mark Coach Dan Walmer served as a source of inspiration to fight hard by being transparent with his journey as a runner who has lupus and refuses to let the disease take over his life.
Danica’s hope is to build a bigger team for next year’s race and continue running, fundraising and raising awareness for lupus in her sister’s memory.
“Nothing compares to crossing that finish line thinking about my sister Erica."
"I was so triumphant and proud to give back and be a part of this great community of people who understand my journey,” said Danica.
To learn more about the program and sign up to participate in a future race, please visit https://www.lupus.org/action/join-team-make-your-mark.]]>
View a timeline of LFA's efforts to secure lupus-specific research funding at the Department of Defense (PDF).
This is a critical step in the legislative process and means that this funding is one step closer to becoming law.
The Senate still must act on its version of the Fiscal Year 2018 Department of Defense Appropriations bill, which includes funding for the Lupus Research Program. If the bill is enacted, it will bring total funding for the LRP to $10 million! We will keep you updated as the legislative process continues.
In the meantime, we want to let you know that the Lupus Foundation of America is working closely with the Department of Defense and others within the lupus community to help provide strategic direction to the LRP. We're focused on ensuring that the new funding is directed to research projects that can make the most difference in the fight against this disease and the search for new treatments.
As the program moves forward, keep an eye out for additional updates about this vital new source of lupus research funding.
Thank you again to all lupus advocates for everything you have done to help make this program possible! You have made a difference!]]>
It’s also the time of year for warnings about the sun’s damaging ultraviolet (UV) radiation. While the summer months are most important, did you know it’s also important for people with lupus to protect themselves from UV all year ’round? And not just outdoors—indoor fluorescent lighting and tanning beds can cause damage, too.
That’s because there are two types of UV that can affect us: UVB is the one that causes sunburn, and UVA can go through window glass and can come from indoor lighting. Researchers have found that lupus can be activated by both types of UV radiation, and it’s important to understand the difference.
But with a combination of protective clothing, correctly used sunscreen, and a good understanding of how UV can affect you, you can be sun- safe, no matter what season it is.
We've gathered the most important things you need to know for year 'round protection:
Dr. Susan Manzi, Chair of the Department of Medicine of Allegheny Health Network in Pittsburgh, and also Medical Director for the Lupus Foundation of America said, “The new injection formulation of Benlysta will provide a convenient option for our patients who prefer to administer the medication at home instead of taking the time for a one hour infusion at a remote location. We are always looking for better ways to serve our patients and this is a major step forward.”
Benlysta was first approved as a monthly infusion therapy for lupus in March 2011. Patients on this original formulation had to travel to an infusion center to receive the therapy. GSK’s Benlysta SC will be self-administered as a weekly injection into the fatty layer of tissue just under the skin. It will be available as either a single-dose pre-filled syringe or from a single-dose auto-injector.
Benlysta SC is expected to be available by the end of August from specialty pharmacies. More information is available from the GSK media release. GSK will post additional information about Benlysta SC soon at benlysta.com.
Learn more about Benlysta on the National Resource Center on Lupus website.]]>
The Committee’s action is a significant victory considering the President’s budget request to Congress proposed to eliminate both lupus programs and cut NIH funding by $6 billion. It also demonstrates the power of lupus advocates as these funding requests were top priorities during the meetings that lupus activists held with more than 200 Members of Congress during last month’s Policy Summit.
Importantly, the bill approved by the Committee includes “report” language that provides guidance on how CDC and OMH should utilize the funding. Specifically, the bill encourages CDC to develop lupus self-management programs to improve quality of life and to study pediatric lupus and the burden of the disease in children. The bill also directs OMH to work with the lupus community to expand the development of tools in order to increase minority participation in clinic trials.
The bill now heads to the full House of Representatives for a vote and the Senate still must act on its version of the legislation. However, if enacted into law, the bill would bring total funding for the registry to $56 million and more than $14 million for the lupus program at OMH.
Thank you to the thousands of lupus activists whose advocacy during the Policy Summit and throughout the year has helped to make these victories possible! We still have more work to do so please keep an eye out for our advocacy alerts and updates.
Senate Action on Health Reform
During last month’s Policy Summit, lupus activists urged Congress to support health care reform that ensures people with lupus have access to affordable and quality care. Thanks to our outreach and the outreach of others from throughout the health care community, it appears that the U.S. Senate does not have the votes to pass the Better Care Reconciliation Act (BCRA), a bill that would increase the cost of coverage, eliminate essential patient protections, cut Medicaid and result in millions of Americans losing their health insurance. However, it’s still possible that as soon as next week, the Senate may vote on a modified BCRA or to repeal the Affordable Care Act (“Obamacare”) and replace it with a new health reform plan at a later date.
Therefore, the Foundation continues to work to make sure that any health care legislation passed by Congress will:
While the next steps in the health reform debate are unclear, it is clear that your advocacy and the advocacy of thousands of others across the country have forced Congress to revisit these vital issues. We will keep you updated and let you know when your outreach to Congress can make the most difference on this issue, which is critical to ensuring that people living with lupus have access to the care they need, when and where they need it.
Thank you again for your tremendous efforts in the fight against lupus!
Have you looked into participating in research, and if so what was the experience like and did you end up enrolling in the study?
Yes. I've done four clinical trials and a few observational studies. My personal preference is for Phase 3 studies, but I have done one Phase 2. For science! – Elyse R.
I have looked into research, and have participated in several studies. None have been clinical trials, but they have been research studies involving using my information, taking surveys, etc. I am not eligible for a lot of the research as I have both lupus and rheumatoid arthritis. In my experience, the research I have taken part in is unobtrusive and has not involved a lot of effort on my part. In terms of clinical trials, I would participate if my condition ever became such that I needed to. – Leslie R.
I enrolled in the Benlysta drug trial study before it was approved and participated in a lupus research study on genetics. – Sara P.
I’ve looked into participating in lupus research studies as an adult, but have not been able to find anything that I am qualified to participate in around the area that I live. However, from ages 11-13 I participated in a study that involved taking an unknown (to me) medication and repetitive ultrasounds of my neck. I honestly do not remember the purpose or the name of the study. My ultrasounds were always scheduled with my Rheumatology appointments so it was never too much travel and I was paid! It was a great experience and I would be willing to do it again if the opportunity presented itself. – Kayla B.
I have looked up opportunities to participate in lupus research. Although I haven't participated in any drug studies, I have taken several questionnaires and the process was very simple. I found out about these studies through the LFA newsletter, and I signed up for the surveys through the LFA website. Depending on how extensive the questions are or if you are part of the demographic that the study is targeting, the questions can take anywhere from 3 minutes to 30 minutes. Sometimes, someone from the study will call you with follow up questions if they are specifically interested in your case. All in all, I think volunteering to participate in lupus research is a way all of us can collaborate to help end lupus for everyone. – Becca M.
I have been screened for two, but didn't meet the disease profile the researchers needed. I will keep looking for opportunities to participate.
– Anne B.
I had the opportunity to participate in the Hematopoietic Stem Cell Transplant study for Lupus at Northwestern University. I am about 10 months post-transplant and have been in remission for the full duration post-transplant. I cannot begin to express the way the transplant has improved the quality of my life. I was at a critical point in my disease course, near death, and the transplant has given me a med and pain free lifestyle. The treatment is grueling, but the outcome is well worth the hardship of the treatment. – Kristin L.
I have never participated in a clinical trial. However, I've always been curious about them. They sometimes seem "out of reach" or difficult to get a lot of information. My doctor has also never mentioned them to me...if the opportunity came up, I would consider it. – Roxi A.
Yes! I participated in the Illuminate study and just enrolled in the Lift study. – Deb J.
Participating in Clinical Trials
Clinical trials are an important part of bringing new therapies to the market—they prove whether or not a drug is safe and effective and pave the way for approval by the U.S. Food and Drug Administration (FDA). Researchers need many people to take part in clinical trials, so by participating in a trial you can make a real difference.
If you have lupus and are ready to learn how you can contribute to research, join the Research.forME Lupus Registry. This registry stores information about individuals with lupus, which researchers can use to learn more about the disease and to notify you about clinical trials.
His running resume includes 40 marathon finishes and several ultramarathon finishes, and he has coached several hundred runners.
Dan began running in 2008 to lose weight and manage his type 2 diabetes. While he did not enjoy running, he loved the physical benefits – he lost 80 pounds within a year and managed his diabetes.
He continued to run for the next eight years, finishing several short distance races, marathons and ultramarathons. He became a certified coach through the Road Runners Club of America and began coaching with a local running club in Houston, Texas. He began to understand the power of running to transform lives.
In January 2016, Dan began experiencing concerning health complications – fatigue, achiness, and low-grade fevers. A few months later, he passed out at work and ended up in the emergency room with dangerously high blood pressure.
After extensive tests, doctors found life-threatening signs of kidney failure. He soon had a diagnosis – lupus.
He had stage IV lupus nephritis (stage five could result in permanent and irreversible damage) and would need dialysis and, eventually, a transplant. Doctors put him on an aggressive treatment regimen: low-dose chemotherapy, high-dose steroids, antimalarial drugs, blood pressure medications and antibiotics.
Fast forward one year, Dan says the biggest health challenge he struggles with is extremely high blood pressure. Dizziness and fatigue affect his ability to pursue his passion of running, although he has been cleared to exercise.
He has learned to lower his expectations toward running and racing. The other health challenge that has an impact on his running performance is the dramatic fluctuation in his weight, which for the past year has been as low as 198 pounds and as high as 235 pounds. He loses weight while on chemotherapy and gains weight when he is taking steroids. He continues to struggle with kidney function and is on heavy steroids to counteract the effects of the disease.
Yet he asserts that running is what has kept him healthy and gave him the confidence to strive for big goals, in addition to the deep and loyal life-long friendships. He describes running after his lupus diagnosis as the passion that woke him up early each morning, anxiously awaiting the miles that were ahead of him.
Coaching has given Dan the opportunity to channel his energy into helping others follow their goals and succeed. As Dan has learned through many hard-fought miles and years of struggling with health challenges from lupus, setting big goals and breaking them into small incremental steps that can be achieved over time can be a transformative life experience.
Dan loves helping seasoned runners improve, but his passion is coaching those who are new to running, especially when they are running for a personal cause. His love for coaching stems from a desire to make a positive impact on people’s lives.
He also is passionate about supporting runners who are trying to raise funds to support lupus research that will save lives. He has raised more than $11,000 so far through his personal fundraising efforts.
Through his coaching, he shares his personal experiences as a runner applying a positive attitude and re-prioritizing in order to achieve goals. He also uses this optimism and problem-solving mentality to tackle and learn from setbacks along the way since regardless of the training program, there will be setbacks that present learning opportunities if viewed from a positive perspective.
It is this attitude that is the motivation behind the Team Make Your Mark training program. Contact us to learn more about the program and sign up to participate in a future race. Registration for our fall races is now open.]]>
Do you access email on an iPhone or iPad using the blue icon with the white envelope? That's the Apple Mail App. There are 2 ways to whitelist a sender.
Mark us as “not junk”
To flag firstname.lastname@example.org and email@example.com as safe senders, find an email from each of these addresses (they might be in your spam folder). You should see a row of icons at the bottom of the screen. Tap on the flag icon on the left side, and select "Mark as Not Junk."
Add us to your contacts
Open an email from the Lupus Foundation of America and select the "From" or "Reply-to" address. From here you’ll see a menu where you can choose to “Add to Contacts”, or “Add to VIPs”. The advantage of “Add to VIPs” is that future emails from us will be added to a special VIP mailbox in iOS Mail.
Here are easy instructions for whitelisting us, whether you use Gmail via webmail or the mobile app.
Getting all future emails from a sender to appear in the “Primary” tab (instead of “Promotions”, or elsewhere) is a quick, two-step process. First of all, drag-and-drop the email message from beneath the tab it’s currently filed under, to the “Primary” tab.
Once done, a message alert will appear with, “This conversation has been moved to Primary. Do this for all future messages from firstname.lastname@example.org?.” Select “Yes”.
On the Gmail app for mobile devices, you can press and hold on the message and select “Move TO”, then add all future messages from a sender to your Primary tab.
There are 2 ways to whitelist a sender in Outlook. The following instructions apply whether you use Outlook 2007, 2010, 2013 or 2016).
Add an email address to your Safe Senders List
Email addresses and domain names in the Safe Senders List are never treated as junk email, regardless of the content of the message. To add us to your Safe Senders List, do the following:
Move a message from us out of your spam folder
Check your spam for messages from us! Right click on the message, select “Junk” and then “Never Block Sender”
For other email clients, simply do a web search for “safe sender list + the name of your email client" (AOL, Yahoo, etc.).
If you’re not already getting our e-newsletter or email updates, why not sign up today? Click the button below (and then add us to your safe senders list!).
Want to get involved and share your story? We invite you to participate in our Sharing the Journey group.
In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day. Mostly, we celebrate what makes the lupus community strong by sharing our journey, together.
Feel inspired? Email SharingTheJourney@lupus.org
The additional funding for the Lupus Research Program brings the two-year total for the program to $10 million and comes just two days after the Lupus Foundation of America’s (Foundation) National Policy Summit and advocacy day on Capitol Hill.
During the Foundation’s advocacy day, activists visited over 200 Congressional offices. As those activists were meeting with Members of Congress, thousands of others from 49 different states participated in the Foundation’s Virtual Advocacy Day and sent over 5,500 emails reaching nearly 400 U.S. Representatives and 98 U.S. Senators, all in an effort to urge their Members of Congress to increase funding for lupus research and ensure access to quality health care.
“It’s clear that the tremendous efforts of our lupus activists, this week and throughout the year, have had a significant impact on the Committee’s decision to continue funding for the Lupus Research Program,”
said Sandra C. Raymond, President and CEO of the Lupus Foundation of America.
"This funding is critical to the fight against lupus as it will help us learn what causes lupus and can advance the development of new treatments for our military heroes and the 1.5 million Americans living with the disease. We thank the leaders of the House Appropriations Committee, including Rep. Rodney Frelinghuysen (R-NJ), and the Congressional Lupus Caucus Co-Chairs – Rep. Thomas J. Rooney (R-FL), Rep. William Keating (D-MA), Rep. Ileana Ros-Lehtinen (R-FL), Rep. Eddie Bernice Johnson (D-TX) for championing this funding increase for lupus research. Of course, none of this would be possible without lupus activists making their voices heard."
Beginning in 2003, the Lupus Foundation of America has led the effort to establish a lupus-specific research program at the DoD. A historical timeline of the Foundation’s advocacy to establish the Lupus Research Program can be found on its website.
The bill now moves to the House floor for a vote. The Senate has yet to act on its version of the legislation, which is expected later this year.
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The lupus activist meetings with their legislators are part of the Lupus Foundation of America’s two-day National Policy Summit.
“The National Policy Summit is the most impactful advocacy event of the year as it provides lupus activists the opportunity to meet directly with Members of Congress to share their daily struggles with the disease, and demonstrate the urgent need to step up the fight against lupus.”
“At a time when health care is top of mind for Congress, lupus activists from all over the country will meet with our nation’s leaders to urge them not only to increase funding for research, but also to ensure they have access to the quality and affordable care they need.”
-Sandra C. Raymond, President and CEO of the Lupus Foundation of America
The National Policy Summit also provides activists with empowering programs and activities including three interactive and educational panel discussions on day one of the event. Panelists include leaders from the Food and Drug Administration (FDA), the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC).
Activists will have direct access to the very leaders who are funding and implementing programs to advance lupus research, education and awareness.
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Following the panel sessions, the Foundation will host an evening Advocacy Awards Reception to honor its Congressional champions whose leadership has made a significant difference in the fight against lupus.
Award recipients include:
The Honorable Rodney Frelinghuysen
United States House of Representatives
Chairman, House Appropriations Committee
Congressional Champion Award
The Honorable Eddie Bernice Johnson
United States House of Representatives
Co-chair, Congressional Lupus Caucus
Congressional Champion Award
The Honorable Bill Keating
United States House of Representatives
Co-chair, Congressional Lupus Caucus
Congressional Champion Award
The Honorable Thomas J. Rooney
United States House of Representatives
Co-chair, Congressional Lupus Caucus
Congressional Champion Award
The Honorable Ileana Ros-Lehtinen
United States House of Representatives
Co-chair, Congressional Lupus Caucus
Congressional Champion Award
In addition to the support from our donors and Board members, we greatly appreciate the grant support for the National Policy Summit from the following organizations: