Overview: There are over 50 rare autoimmune diseases that often benefit from the same therapies and immunomodulating drugs. There is significant synergy in the research for autoimmune diseases. Recognizing the importance of having a coordinated effort to better understand and study autoimmune diseases, the Autoimmune Registry has been collecting data on all autoimmune diseases.

In our inaugural forum, we will discuss the importance of having registries and collecting data, the path of drug development for autoimmune diseases, the role of clinical trials and their potential for generating revenue for rare autoimmune disease organizations, as well as the common struggles faced by the autoimmune disease community and how we can learn from each other moving forward. This event is free to attend with registration. Drinks and snacks will be provided. Those who register before July 31st will also receive a goodie bag.

Details: Sheraton San Diego Hotel & Marina, Harbor Island Drive, San Diego, CA on Thursday, September 21st, 2023 at the Marisol conference room, following the Global Genes 2023 RARE Advocacy Summit.

Agenda:

12:40 - 1 pm: Welcome and Keynote Speaker.

1 - 1:30 pm: What is a registry and why data is important in understanding and treating autoimmune diseases.

1:40 - 2:10 pm: The Orphan Drug Act and how it has impacted the drug development process for autoimmune diseases; the role of clinical trials and how organizations can help support their mission through recruitment.

2:10 - 2:40 pm: Diagnostic struggles faced by the rare autoimmune disease community and how we can learn from one another.

2:40 – 3 pm: Networking

Thanks so much to everyone who attended! Presentations from the event can be downloaded below. Recordings of the sessions are also available for viewing. If you have any questions or would like to collaborate on future events, please feel free to contact us.

• What is a Patient Registry?

• Trends in Autoimmune Drug Development

Speakers

Emmitt Henderson III was diagnosed with Systemic Lupus and Lupus Nephritis in 1995 but had symptoms going back to 1980.

Throughout the years, he has endured major complications from heart, liver, kidney, and lung failures, and avascular necrosis that led to a shoulder and knee replacement. He had a clinical trial, bone marrow stem cell transplant; he was on oxygen due to his lung failure and had a kidney transplant due to kidney failure. He was also diagnosed with Rheumatoid Arthritis, Sjogren’s Syndrome, and MTCD and has suffered from a stroke, shingles, gout, chronic fevers, diabetes, and hypertension.

In 2019, Emmitt was diagnosed with a brain disease that medically retired him from his career. He decided to advocate for the same disease that debilitated him since 1995 to discuss how his mental health got him through it all. He created his organization called Male Lupus Warriors Corp to spread Lupus and Mental Health awareness. He created a safe space for men to meet and talk about their hardships in life while also encouraging everyone to not be a victim of their illness.  He continues his advocacy by being active on social media, facilitating support groups, and guest speaking throughout the country.

“Helping every person” are words that Reggie lives for. He is a survivor of a rare autoimmune disease, called anti-GAD65 autoimmune encephalitis. He also suffers from multiple comorbid autoimmune diseases. Reggie understands the real-world challenges each person has to journey through to find a diagnosis and treatment. He is also aware of the proactivity steps that all stakeholders must engage in to save a life. At the Autoimmune Registry, Reggie is establishing collaborative alliances with other patient advocacy and research groups that collectively aim to find a cure for autoimmune diseases.

Reggie earned his BS in Business Administration and BA in Philosophy from the California State University, Dominguez Hills. He has served in key leadership positions with leading for-profit corporations. He also understands the joy of turning a charitable vision into a reality.

Judanna is a retired practitioner of Eastern medicine and Acupuncture. She has struggled with autoimmune issues since childhood. Over the course of the next few decades, she received numerous diagnoses, including Complex Regional Pain Syndrome, Dermatomyositis with CREST overlap, Sjögrens, Antiphospholipid syndrome, and Hashimoto’s Thyroid Eye Disease. Through her journey, she experienced medical gaslighting and long delays in diagnosis. She also went through numerous experimentations to find RX treatments, natural herbs, vitamins, dietary changes and exercises that worked for her. With her multiple autoimmune conditions, she often found that using immunosuppressants for one disease would improve her overall symptoms as well as other autoimmune diseases, though the medications still came with significant side effects.

Today, she is a fierce advocate for patients and shares her story to lessen the stigma for patients who are often not believed by their providers, friends & families. She believes the answer to extraordinary long delays in diagnosis and treatment is to increase medical education about rare autoimmune diseases and to raise awareness about clinical trial opportunities, which can bring new treatments to market as well as enhance early detection in children.

Emily first became sick in 2019, at the age of 24, and was left with paroxysmal nocturnal hemoglobinuria and aplastic anemia. At the time, doctors also diagnosed her with Hashimoto’s but could not identify a source for her hematological abnormalities. After several months of misdiagnoses, she was eventually administered ATGAM, which improved her symptoms. However, she was subsequently treated for thyroid cancer, which may have caused the relapse of her blood issues. Following a bone marrow transplant in 2021, she developed Evan’s syndrome and vulvar cancer stage 0, for which she is currently receiving treatment.

Despite the many ups and downs over the past 4 years and her ongoing treatment, Emily is happy to be alive and still aims to thrive. She documented her illness journey on her YouTube Channel, Boundless Intrepid Discovery, which also features her travel adventures. Since her first diagnosis in 2019, Emily is proud to have gone on an international trip to Peru, bought a house, and returned to work as a mechanical engineer. 

Aaron is an entrepreneur with 35 years of experience in software development, the last 15 focused on healthcare and medical research. He was co-founder of Recombinant Data, a software company that implemented database technologies for academic medical centers. Recombinant was acquired by Deloitte Consulting in 2012.

In 2013, his mother was diagnosed with Sjögren’s syndrome. He learned that it was autoimmune and witnessed his mother’s experience of waiting for 10 years before she was correctly diagnosed. He decided to build a registry for autoimmune illness, modeled on the National Cancer Registry, to improve diagnosis by gathering statistics and research on this important class of disease.

Aaron earned a BA from Middlebury College and an MBA from Columbia University. He has also taken courses at Stanford University’s Biomedical Informatics program.

Ingrid previously worked as an attorney representing corporations, hospital organizations, and insurance companies in a variety of litigations, including medical malpractice and breach of contract claims. She received her JD and MBA degrees from Fordham University in 2012 and 2022, respectively.

She became a patient advocate in 2014 after being diagnosed with Sjogren’s disease. With her experience in the healthcare system as well as an undergraduate degree in mathematics, she went on to develop a symptom-tracking app for patients with Sjogren’s disease.  By joining the Autoimmune Registry, she hopes to bring the patient perspective to research projects and to develop symptom-tracking technologies that can help the research community better understand autoimmune diseases.