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Research Support

LADA Continues to Expands Our Lupus Research Program

For anyone impacted by lupus, what motivates all of us to get out of bed each day at the Lupus and Allied Diseases Association is our belief that research will eventually improve our lives.

 

Because of this, we are diligent in our efforts to:

  • Ensure that the patient perspective is included and recognized as an equal stakeholder in the healthcare, public policy and regulatory arenas, and across the research continuum.

  • Engage with other stakeholders and organizations to prioritize and accelerate lupus research and drug development such as academia, non-profit research, patient and provider organizations, individuals with lupus and their loved ones, the biopharmaceutical industry, and federal and state public officials.

  • Collaborate with patient and care partner experts to share their viewpoints with other stakeholders on clinical trial methodology such as trial design, PROs, informed consent, endpoints, benefits vs. risks assessments, decentralization, recruitment, patient education materials, and treatment value.

  • Support lupus and autoimmune research that will identify causes, advance better diagnostics, and lead to the discovery of superior treatments and ultimately, cures.

 

Once again, LADA has expanded our research investments from the previous year.

 

We were honored to present Robert Hewson DPM and the Masonic Medical Research Institute (MMRI) Team with a check in the amount of $200,000 at the Annual Lupus Charity Golf Classic Dinner to continue to support Dr. Samantha Le Sommer’s and Dr. Maria KontaridisGain-of-Function and Loss-of-Function SHP2 Mutations Alter Cell Fate During Hematopoiesis Leading to Downstream Autoinflammatory and Autoimmune Pathology, Dr. Maria Kontaridis’ and Dr. Samantha Le Sommer’s Use of Cardiosphere-Derived Human Exosomes as Therapeutic Agents in SLE, and Dr. Jason McCarthy’s Cell-Specific Inhibition of the RhoA Pathway as a Target in Lupus Nephritis and we added in initial funding for Dr. Chase Kessinger's Effects of T and B lymphocytes on Venous Thromboembolism in Systemic Lupus Erythematosus. In addition, we are privileged to share that in May, the MMRI launched the Lupus and Allied Diseases Association Center of Excellence in Rheumatology and Immunology Research Lab at the Institute. This brings our total research support amount to $415,000.00 to the MMRI so far.

 

Two years ago, we established the Marc R. Chevrier, MD, PhD, FACR, Lupus Research Memorial Fund at the Rheumatology Research Foundation (RRF) to honor the life and legacy of Dr. Chevrier, a pioneer and patient advocate in the field of lupus. The fund supports lupus research funded within the Foundation’s preceptorships program. I am pleased to share that we donated another $35,000 this year increasing the fund to $109,905.

 

In June, we donated $45,000 to the Lupus Foundation of America, Inc. to the Michael Jon Barlin Childhood Pediatric Research Program for Dr. Joyce Chang’s Functional Properties of the Prefrontal Cortex and Cognitive Dysfunction in Childhood Lupus at the Boston Children’s Hospital, Dr. Linda Hiraki’s Investigating the Genetics of Anxiety and Depression in Children and Adolescents with Systemic Lupus Erythematosus at The Hospital for Sick Children, Dr. Cuoghi Edens’ What About When I Grow Up? The Fertility Goals and Concerns of Teens and Young Adults with Childhood-Onset Systemic Lupus Erythematosus (cSLE) at the University of Chicago, and Dr. Ram Raj Singh’s Proteogenomic Profiling of Kidney Biopsies from Children with Lupus Nephritis Using Spatial-CITE-seq at the University of California, Los Angeles bringing our total support to the LFA to $548,569.

 

In July, we donated $101,400 to continue to support promising Pediatric Research at the Childhood Arthritis and Rheumatology Research Alliance for Deriving Research Priorities in Neuropsychiatric Systemic Lupus Erythematosus in Children for Dr. Ekemini Ogbu from the Cincinnati Children’s Hospital Medical Center/University of Cincinnati, Dr. Martha Rodriguez from Indiana University, and Dr. Andrea Knight from the Hospital for Sick Kids and Dr. Linda Hiraki’s Advancing Precision Medicine through Genetic Study of cSLE at the University of Toronto.

 

In September, we donated $150,000 to the Lupus Research Alliance to support Dr. Eric Gale’s Noninvasive Imaging of Lupus Nephritis Disease Activity at Massachusetts General Hospital and Dr. Maximilian F. Konig’s Targeting Autoreactive B Cells to Prevent Thrombosis and Fetal Loss in SLE at Johns Hopkins University School of Medicine. This brings our total research support amount to $1,131,050.00 to the LRA so far.

 

LADA donated $531,400 this year, which is a new annual lupus research funding record for us, bringing our overall total to $2,352,838.73 since 1990. Our ability to fund this level of lupus research is partially due to the monies raised from the golf event over the years.

 

These are unparalleled times for all of us in the lupus community, especially for those of us who have waited decades for more effective treatments that do not destroy the immune system. There are currently over 140 drugs in the pipeline for treating systemic lupus erythematosus and lupus nephritis right now. As people with lupus ourselves, we are working closely with many academic centers, biopharmaceutical companies and other non-profit entities to ensure that our unique patient and care partner perspectives are being included in lupus research and development and on access to care and treatment issues.

 

All of us at LADA believe that it is imperative that all individuals with lupus and allied diseases are given the chance for a better quality of life and the opportunity to pursue their goals and live out their dreams. Our supporters have helped us all to move closer to that objective. After all, Lupus ends with Us. 

Pictured above are the Masonic Medical Research Institute Representatives receiving LADA's 2023 research donation from Kathleen Arntsen, President and CEO of LADA at the Lupus Charity Golf Classic Awards Dinner on August 17, 2023.

Lupus Research Honor

LADA’s Board of Directors and supporters were thrilled and privileged to join Masonic Medical Research Institute (MMRI) Executive Director Maria Kontaridis, Ph.D.,  Jason McCarthy, Ph.D., Samantha Le Sommer and Robert Hewson DPM to celebrate May as Lupus Awareness Month on May 19, 2023 while the MMRI launched their new Center of Excellence in Immunology & Rheumatology Research Lab named in honor of LADA for their outstanding lupus research support. The collaboration between LADA and MMRI seeks to further the salient and ground-breaking research at MMRI in this field. Event speakers included Kathleen Arntsen, President and CEO of LADA, and Maria Kontaridis, Ph.D., Executive Director, and Gordon K. Moe Professor and Chair of Biomedical Research and Translational Medicine at MMRI, whose research efforts are, in part, dedicated to lupus research.

 

The event also included federal, state and local policymakers promoting lupus awareness and research. In addition, Senator Charles E. Schumer sponsored a United States Senate proclamation and New York State Senator Joseph A. Griffo, Assemblywoman Marianne Buttenschon and Assemblyman Brian D. Miller sponsored the joint legislative resolution commemorating May 2023 as Lupus Awareness Month and gave remarks. Senator Griffo has been the Senate Prime Sponsor of the resolution since 2009 when LADA launched the state awareness initiative with him and Assemblyman Fred Thiele (1st Assembly District) is the current Assembly Prime Sponsor of the resolution. Lupus groups throughout the country join with state and federal lawmakers each May to help educate the general public about lupus and the need for research program support to develop more effective treatments and discover the cure for this baffling condition.  

 

Other attendees included Former Assemblyman John Salka, who is the Director of Community Relations for Congressman Brandon Williams; Oneida County Director of Public Health Dr. Daniel Gilmore; Regional Director at Empire State Development, Allison Madmoune; members of LADA’s Board of Directors; members of MMRI’s Board of Directors and Community Advisory Committee, scientists and staff as well as many other community supporters. 

Click here to view the proclamation from Senator Charles A. Schumer. The New York state joint resolution is pictured further below.

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Pictured above left: Maria Kontaridis, Ph.D., Executive Director, and Gordon K. Moe Professor and Chair of Biomedical Research and Translational Medicine at MMRI and Kathleen Arntsen, President and CEO of LADA and above right: Regional Director at Empire State Development, Allison Madmoune; Assemblywoman Marianne Buttenschon; Assemblyman Brian D. Miller; LADA President & CEO Kathleen Arntsen; MMRI Executive Director Mari Kontaridis, Ph.D; Senator Joseph A. Griffo; and Former Assemblyman John Salka, Director of Community Relations for Congressman Brandon Williams.

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Pictured above left: LADA Board Secretary David Arntsen and President & CEO Kathleen Arntsen with Senator Joseph A. Griffo and above right: LADA President & CEO Kathleen Arntsen and Advocate Meghan Valadez with Assemblywoman Marianne Buttenschon.

Fall Events

A Fall Filled With Patient Voices

I am pleased to share that Lupus and Allied Diseases Association has been diligent in our efforts this Fall to improve access to care and quality of life for people with lupus and allied diseases by fostering collaboration among stakeholders, promoting unity in the community, and wielding the patient voice as a catalyst to advance innovative advocacy, education, awareness and biomedical research initiatives to identify causes, advance better diagnostics, and discover superior treatments and cures.

We kicked off and ended October with our in-person Enhancing Lives by Empowering the Lupus Community Education Symposium & Luncheon Roadshow. The programs featured clinical research experts, people with lupus and their loved ones discussing lupus research, patient journeys and perspectives, healthcare access, and care partnering. We co-hosted the events with Lupus Foundation New England in Boston on October 2nd and the Lupus Society of Illinois in Chicago on October 29th.

As patient experts we shared our real world perspectives on several lupus research projects and advocacy roundtables, participated in coalition calls, and provided comments to state and federal policymakers on treatment access issues and at the FDA’s CRDAC AdComm on a potential therapy for anemia of CKD through our Make Your Voices Heard Initiative.

 

In late October we launched our Elevating the Patient Voice in HEAs Report and Survey findings and website resource page to educate and empower U.S. based patient advocacy organizations to effectively engage and participate in value assessments.

For the 20th year in a row, we attended the Annual American College of Rheumatology (ACR) Meeting, ACR Convergence 2022 in Philadelphia in November to learn, network, and share information. Conference attendees were motivated to be at an in-person event and thankful for opportunities to reconnect with colleagues and make new rheumatology connections.

Our week at the ACR began with LADA’s 7th Annual Corporate Visionary Circle (CVC) Meeting where 50 attendees representing 19 corporate and 5 patient organization partners participated in a robust discussion that included shared priorities, mutual challenges and potential synergistic solutions in the rheumatology/immunology  community. The meeting was followed by a joint reception co-hosted by LADA and our patient advocacy partners—Alliance for Gout Awareness, Global Healthy Living Foundation, Infusion Access Foundation, and U.S. Pain Foundation. These were not an official function/event of the American College of Rheumatology.

For the 7th year in a row we were honored to sponsor the Lupus Community Booth in the Exhibit Hall at the Conference that included our beautiful butterfly backdrop and was manned by patient and carepartner representatives from LADA, LupusChat, Lupus Foundation New England, Lupus Society of Illinois and Lambda Sigma Sigma Lupus. We were able to sponsor 12 patient and carepartner advocates to participate in the conference through our Make Your Voices Heard Program in order to volunteer at the booth, interact with attendees, drive conversations on social media, and share their experiences with their communities.

 

We were also thrilled to partner with the Rheumatology Research Foundation (RRF) to host a reception to thank contributors, family and friends for supporting the Marc R. Chevrier, MD, PhD, FACR, Lupus Research Memorial Fund. This Fund was established to honor the life and legacy of Dr. Marc Chevrier, a pioneer and patient advocate in the field of lupus who was fondly referred to as Papa Lupus by the patient community. The fund has grown to $75k since its inception last year and supports lupus research funded within the Foundation’s preceptorships program. In addition, we attended several ACR receptions, AWIR’s reception, the CARRA/Arthritis Foundation reception, and the LFA’s Evelyn V. Hess Reception. Click Here for a link to our tribute to Marc at the reception.

Following the conference, we attended one of our favorite events, the Lupus Research Alliance’s (LRA) Breaking Through Gala in New York. This year LADA was privileged to support the LRA while sponsoring a table at the event in honor and recognition of individuals with lupus for their grace, dignity and courage. Our patient advocate and research guests enjoyed an inspiring evening filled with fellowship and fun.
 

We are grateful to all of our program sponsors and extremely blessed to have strong relationships with other organizations in the rheumatology community and thank them for their partnership and support.

As a national all-volunteer and patient-led organization that works to ensure that the patient and carepartner stakeholder is included as an equal participant in the healthcare, regulatory and public policy arenas and across the research continuum, we are excited that our unique perspectives are finally being valued. It is only by elevating each other and focusing on collaboration instead of competition that we will overcome access to care and treatment challenges; promote diversity, equity, and inclusion; and advance research for diseases of unmet need in order to improve the lives of those impacted.
 

LADA Expands Our Lupus Research Program

LADA is excited to share that we expanded our lupus research program investments in 2022 even after having a memorable year of giving to research last year.

 

For anyone struggling to live with lupus or to love someone with lupus, what motivates us to face another day is our hope that research advancements lie just around the corner that will improve our lives. Because of this, we believe wholeheartedly in investing in quality research here at the Lupus and Allied Diseases Association. 

During the 2022 Golf Classic Awards Dinner, we were thrilled to present The Lupus Research Alliance (LRA) Representatives and Golfers Albert Roy, Dorey Neilinger, and Ian Kirkman with our 2022 annual research donation for $150,000 to continue to support Dr. Zahi Touma at University of Toronto for his Modeling Cognitive Impairment project and Dr. Joyce Chang at Boston Children’s Hospital for her Pediatric Vascular Injury project. We are honored to say that we have now given $981,050 in 21 years to support lupus research at the LRA. 

In July, we donated $70,000 to support the Pediatric Lupus Research Program at the Childhood Arthritis and Rheumatology Research Alliance (CARRA) for two novel pediatric lupus projects.

In June, we donated $50,000 to the Lupus Foundation of America to continue supporting Dr. Gary Gilkeson's Mesenchymal Stromal Stem Cell Research Program bringing our total support to the LFA to $503,569 since 1990 for various research projects.

In May, LADA presented a check for $150,000 to Maria Kontaridis, PhD, Executive Director and Gordon K. Moe Professor and Chair of the Biomedical Research and Translational Medicine at the Masonic Medical Research Institute (MMRI) in Utica, NY for three distinct lupus projects. This funding also launched our Lupus Patient Advocacy and Research and Development Collaborative Initiative with the MMRI. Since we previously supported lupus research at the Institute from 1990 to 1999, this brings our total research support amount to $215,000 to MMRI. We love the fact that lupus research is back in the Mohawk Valley and that LADA was founded in 1978 in East Utica, not far from the Institute. 

 

We continued to support the Marc R. Chevrier, MD, PhD, FACR, Lupus Research Memorial Fund at The Rheumatology Research Foundation with a $30,000 grant in February. This Fund honors the life and legacy of Dr. Chevrier, a pioneer and patient advocate in the lupus field, and dear friend to us at LADA. The fund supports lupus research funded within the Foundation’s preceptorships program and has grown to $74,705 since it was established in March 2021.

 

LADA donated a record breaking $450,200 to lupus research in 2022, bringing our overall total to $1,848,324 since 1990. This is due in large part to the monies raised at the Golf Classic each year. Not too bad for our all-volunteer and patient-led organization, we are small but mighty and march among giants. 

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LADA President & CEO Kathleen Arntsen presented our $150,000 annual research donation to Lupus Research Alliance Representatives Dorey Neilinger, Ian Kirkman, and Al Roy at the Golf Classic Dinner.

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LADA Board of Directors presented a $150,000 lupus research donation to Masonic Medical Research Institute Executive Director Dr. Maria Kontaridis on May 19,2022.

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LADA Board of Directors and supporters with MMRI's Executive Director Dr. Maria Kontaridis, Scientific Operations Manager, Jason McCarthy, PhD, and Postdoctoral Fellow, Samantha Le Sommer, PhD at the Institute on September 22, 2021.

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