Lupus Foundation Of America Inc

Network support and services:the lupus foundation of america's national network includes chapters, regional offices, ambassadors and support groups across the united states. Network affiliates conduct education programs and support research, along with providing information, support and advocacy to improve the quality of life for those affected by lupus.the lfa provides network affiliates with capacity-building services, organizational development, strategic support, training and consultation. Our national ambassador program continues to grow, with these committed and specially trained volunteers playing a vital role in supporting the foundation's mission. We have over 176 trained ambassadors who provide community-based, peer-to-peer education and support. The lfa also provides oversight and resources to more than 70 different support groups and 135 trained support group facilitators who serve constituents nationwide. In 2024, the lfa expanded its support groups to serve more individuals who are affected by lupus. These include lupus support groups focused on populations with a high disease prevalence and/or require unique needs in disease management, such as: men, youth ages 21 and under, black women, lupus warriors and their loved ones in the asian community, bilingual and spanish support for lupus warriors and loved ones in the hispanic community, those serving in the military and their family members, newly diagnosed lupus warriors, those at risk and impacted by lupus nephritis (ln), those living with the challenges of central nervous system lupus (cns), caregivers, grief support for those who have lost a loved one to lupus, and spiritual support. We also have a weekly open forum for peers to ask questions. Our groups are open to everyone and offered both in-person and virtually to ensure greater access to this valuable resource.the lfa continues its leadership role of the world lupus federation (wlf), a global coalition of more than 200 lupus patient advocacy groups from over 75 countries. The wlf's mission is to advance lupus awareness and advocacy initiatives that bring greater attention and resources to the fight to end lupus worldwide. In 2024, the wlf conducted a global patient survey focused on steroids use revealing that 91% of respondents have taken oral steroids for lupus treatment. More than 7,700 people living with lupus from over 100 countries participated in the survey. Additionally, the lfa and wlf developed co-branded fact sheets on "understanding lupus'' in spanish for wlf patient groups in honduras, nicaragua and puerto rico. The lfa also engaged with volunteers and supporters throughout the u.s. We held 29 walk to end lupus now events across the country allowing for important connection and engagement among walk participants, sponsors and volunteers, as well as the opportunity to raise awareness and funds vital to improving the quality of life for all people affected by lupus. The virtual 6 challenge, 6 days to complete 6 miles, part of the lfa's team make your mark endurance program, continues to provide a unique opportunity for people across the country to participate in the way that best meets their needs and interests. In addition, more than 188 content creators joined us for game on! To end lupus, our three-day live stream event where streamers from around the world raise awareness of lupus and funds for lupus research.

Research:due to recent advances in therapies, roughly 97 percent of lupus patients are able to live at least 5 years after diagnosis. Research focused on improving the quality of life for people living with lupus and advancing our understanding of the disease is more critical now than ever before. Our national research program mirrors that of the national institutes of health (nih) where the action plans are focused on addressing key areas related to lupus research including:- lupus as a spectrum disease.- development of new technologies to close the gap in our understanding of disease mechanisms.- supporting the development of novel treatment paradigms.- working in tandem with partners to support lupus research and research training. The lfa continues to lead initiatives to overcome barriers that inhibit progress in developing and approving new, effective and tolerable treatments for people with lupus, including:- leading the addressing lupus pillars for health advancement (alpha) project, a global multi-phase initiative to address patient-provider communication gaps through the creation of an innovative shared decision-making tool. During the reporting period, we established a strong foundation by conducting a systematic literature review of decision aids, communication strategies and key features that enhance patient decision making in the clinical setting and improve measurable health outcomes. Based on these findings, we have begun the development of a shared decision making tool that integrates best practices from the literature and insights from key partners specializing in shared decision-making, lupus and effective communication with the most vulnerable populations. This tool will incorporate the american college of rheumatology (acr) sle guidelines, with aligned components from the eular guidelines to ensure comprehensive, evidence-based support for patient decision-making.- launching the predict and prevent lupus research grant. The recipient of this award is dr. Karen costenbader, a professor at harvard and rheumatologist and brigham and women's hospital. Her project entitled, community action for resilience against lupus. This work uses a lupus risk prediction model based on family history and known risk factors to identify women at increased risk for lupus. The care-lupus study will recruit first degree relatives of lupus patients enrolled in the research accelerated for you (ray) u.s.-wide registry and the brigham and women's hospital large lupus population.- supporting a multi-year study of mesenchymal stromal cells as a potential treatment for lupus. The medical university of south carolina and its tangential nine clinical sites are nearing completion of enrollment with 80 of 81 patients for the phase ii study entitled, "a phase ii controlled trial of human allogeneic umbilical cord-derived mesenchymal stromal cells (mscs) for the treatment of refractory lupus." investigators expect to finish the study in early 2026 and have acquired additional support to continue with phase iii research and data analytics. - recruiting more than 1,200 new people with lupus to participate in research accelerated by you (ray), a lupus registry for people with lupus and caregivers (on behalf of the lupus patient) to share information about their lupus experience. We have also increased the representativeness of the population enrolled in the registry. The ray platform is being upgraded to expand our efforts to the global lupus community. We have partnered with the medical university of south carolina and the allegheny health network to diversify our recruitment efforts.- funding graduate and undergraduate student fellowships and early career development grants to support a new generation of lupus clinician-scientists. These awards address a severe loss of current and future lupus investigators due to a decline in federal training support. Partnering with lupus canada for a fifth year to manage their catalyst grant, which provides one-year funding to canadian researchers at any stage in their careers. The lfa also expanded and launched new strategic partnerships with organizations that play a central role in advancing lupus science. Part of the lfa's efforts and support for these strategic partnerships included:- funding the impact (improve pregnancy in aps with certolizumab therapy) phase ii trial of a biologic therapy to prevent adverse outcomes in high-risk pregnancies among patients with antiphospholipid syndrome, with or without systemic lupus erythematosus. This study will be completed in march 2025.- continuing our support of the systemic lupus erythematosus collaborating clinics (slicc), a global body of lupus experts, to update the slicc damage index, the only food and drug administration (fda)-accepted outcome measure for lupus clinical trials. The slicc team has developed a new disease activity index that is more comprehensive and accounts for disease resolution that may be possible with the advent of new car-t cell therapies that have recently entered the lupus research ecosystem.- participating in lupus abc, a public-private partnership led by the lupus research alliance in collaboration with the food and drug administration to improve lupus clinical trial outcome measures.- partnering in the treatment response measure for sle (trm-sle) project where we work to prioritize the patient voice on the steering and advisory committees for the project.through our direct funding support and various foundation initiatives, we invested over $1 million to fund peer-reviewed research grants, awards to investigators, research partnerships and collaborative projects. As part of our research funding efforts, the foundation worked with congress and federal agencies to secure $160 million in public funding for lupus research and education programs in fy24 and are working to secure an additional $173 million in fy25, including funding from the national institutes of health, the centers for disease control and prevention, the department of defense and the office of minority health.the lupus foundation of america continues to accelerate clinical trials by using multidimensional approaches to impact important factors that shape the drug development pipeline. The lfa professional online instrument training (lfa point) is the gold-standard online training and testing site for clinical trial outcome measures used in the assessment of people with lupus in clinical trials. This year nearly 7,500 certificates were awarded to health care professionals completing the training.

Patient education and support:the lupus foundation of america remains a leader in lupus education, and once again provided education, support, and other assistance to individuals with lupus, their families and caregivers.our educational website, the national resource center on lupus (nrcl), remains the most comprehensive lupus education site available. The nrcl serves as the first stop for people searching for basic information on lupus and local resources. We continued to create health education resources in a variety of formats and languages covering topics important to people with lupus. We published more than 20 new health education resources on the nrcl in english and spanish in the past year. The nrcl had more than 6.5 million page views in fiscal year 2024.we produced three new episodes of our patient education podcast, the expert series, featuring lupus experts offering information and insights into essential topics. The podcasts are available through lupus.org, youtube, itunes, and spotify. Topics during fiscal year 2024 included stress and stress management, lupus and cancer, and lupus nephritis. These three episodes had more than 7,000 plays across all platforms. In total, there were more than 24,000 plays of all episodes across all platforms in fy2024. The lfa has expanded research education for patients. This past year, we launched our research webinar series with the highly successful webinar titled unlocking car t: a special edition patient education webinar. Esteemed panelists alongside two people living with lupus shared their experiences with car t cell therapy. The meeting attracted over 1,400 registrants. Of those, 609 attended live, with 458 unique live views. Education about treatments and unique therapies in the drug development pipeline will continue as part of our core programming.our 12-week lupus self-management email series, take charge, gained 1,115 subscribers in 2024. Since its launch in september 2023, tome control, a culturally and linguistically appropriate spanish version of take charge has reached 258 subscribers. In total, the programs have reached almost 17,000 subscribers.lupus and you: answers, advocacy, action (lupus & you) continues to be offered virtually. In 2024, our national lupus & you series reached more than 5,000 people, providing people with opportunities to learn from leading experts, chat with our health educators, and get their questions answered no matter where they live. We began a post-event blog to continue to answer questions and refer individuals to our resources. We also offered our first all-patient discussion focused on daily life with lupus. Our online lupus self-management program called strategies to embrace living with lupus fearlessly (self) also continued to grow. Self is a free, online, evidence-based, self-management program designed to help people with lupus build and enhance skills in four pillars of lupus self-management: managing symptoms, managing stress, managing medications and working with their healthcare team. In 2024, self gained 2,313 enrollees.in 2024, we extended our community-level engagement to include 14 libraries by establishing health corner displays. Materials, such as a branded vertical banner, educational tabletop display, and health education factsheets, were successfully shipped to the libraries.in addition, our team of health education specialists responded to 2,546 inquiries (of which 355 were in spanish) received via telephone, email, and handwritten letters and guided people to the appropriate information to manage their lupus. The health education specialist's lupus information packet, a digital document available in english and spanish, was downloaded 4,029 times in english and 527 times in spanish over the course of the year.

Professional relations and education:our professional education programs are designed to develop and increase knowledge, skills and professional performance of all healthcare providers who treat people with lupus. Within these programs, we work to translate research findings into public health recommendations for physicians, other healthcare professionals, and their respective organizations. In 2024, we continued to focus on expanding partnerships with organizations that serve medical and other healthcare professionals. The lfa officially launched the community health worker (chw) resource hub in february 2024 in partnership with chws across the country. The chw hub features on-demand learning modules to increase chw's knowledge about lupus including the signs and symptoms, diagnosis, treatments, management, resources, and support available to those living with lupus. The development of the hub allowed the lfa to expand its capacity building efforts to include in-person, virtual, and on-demand. In 2024, a total of 212 chws were educated through all modes of training. Our continued partnership, education, and outreach efforts in 2024 also included our in-kind collaboration with patientpoint, a leading digital health company that connects patients, healthcare providers, and life sciences companies with accurate health information in the clinical setting. This partnership has enabled us to place lupus awareness, education, and resource messaging on digital screens in physician offices, specifically waiting rooms, exam rooms, and doctor back rooms. Through this donated advertising (valued at $1,113,171), we were able to reach nearly 31,000 rheumatology and primary care health care professionals. Published in june 2024, the lupus science & medicine (ls&m) impact factor has been updated to 3.7 with a citescore of 5.3. The impact factor ranking is 14/57 up from 17/57 in 2023. The journal continues to see an average of 27 submissions each month with a 33% acceptance rate.the lupus science and medicine podcast has been a valuable platform for sharing insights and fostering dialogue on critical topics related to lupus research and treatment. The podcast is an invaluable resource for clinicians, researchers, and patients alike, making significant contributions to the field of lupus research and is now published on podbean, a podcast hosting platform that provides tools for podcasters to publish, manage, promote, and monetize podcasts. We published 12 new podcasts covering topics from the use of krill oil in treating sle to triple therapy for effective treatment of lupus nephritis.