Third Annual Autoimmune Community Summit Informs, Inspires, and Empowers

Last week, we held our virtual Autoimmune Community Summit, bringing together more than 2,000 people affected by autoimmune disease for educational and empowering sessions led by researchers, physicians, mental health professionals, policy experts, patient advocates, and more.  From inspiring personal stories to practical tips for managing autoimmune disease to cutting-edge science, the summit delivered knowledge and support.

Lee Thomas Shares the Power of Empathy

The event began with a powerful keynote from Lee Thomas, a renowned news anchor and reporter from Fox 2 News Detroit. He also hosts the popular movie review show, “CriticLee Speaking.” Diagnosed with vitiligo, an autoimmune disease that affects skin pigmentation, Lee faced a potentially devastating challenge in his career. However, he transformed adversity into an opportunity for growth.

“The disease that could have ruined my career turned out to be the biggest challenge and blessing in my life,” he shared. Lee now travels the world, sharing his story and techniques on overcoming life’s obstacles through the power of empathy.

Empowering the Community with Knowledge and Support

With a comprehensive agenda, speakers and panelists presented the latest research and innovations, shared valuable resources, and offered strategies for becoming empowered patients, advocates, and care partners.

• Each day in “The Autoimmune Disease Journey: Patient Stories,” individuals living with autoimmune diseases shared their unique experiences, where they find support, and what they want to share with the entire autoimmune community.
• In “Exploring Complementary Medicine & Diet,” Neeyaz Zolfaghari and Saimun Singla, DO, discussed nutrition and the effects of certain food on inflammation, touching on the Mediterranean diet and anti-inflammatory diets, as well as the role of complementary treatments such as acupuncture.
• In “Navigating Clinical Trials,” Shadé Mallory and Bridget Capital discussed clinical trials, how they work, how to find them, the different types of clinical trials, and more. Shadé shared her personal experience of being enrolled in a clinical trial.
• In “Managing Pain and Fatigue,” Cheryl Crow shared the bio-psycho-social model of pain, and Emily Taylor explained the five types of fatigue. Both shared tips for talking to your doctors about pain and fatigue, and tools for managing pain and fatigue.
• In “Supporting Care Partners,” Jason Resendez, Sue Peschin, and Sheilah Gauch discussed challenges facing caregivers. The panel touched on tools for caregivers, including building a peer network, participating in support groups, practicing self-care, and the importance of asking for help.
• In “Innovations in Autoimmune Treatment,” Dr. Peter Maag shared developments in CAR T-cell therapy — using cells from our own immune system to reduce the development of autoimmune antibodies. Ellen Rudolph discussed WellTheory, a virtual nutritional and lifestyle coaching platform.
• In “Understanding Public Policy,” U.S. Representative Brad Wenstrup and U.S. Representative Mariannette Miller-Meeks talked about the need for patient-centered health policy, including legislation that brings more transparency and clarity to the cost of healthcare and gives patients improved access to care. Amanda Krzepicki and Sloane Salzburg explained the Safe Step Act and how step therapy and Pharmacy Benefit Managers (PBMs) work.
• In “The Future of Autoimmune Disease Research,” Dr. Nina Luning Prak highlighted exciting areas of current autoimmune research, including genetic testing, the role of environmental factors and infections on autoimmune disease, identifying early biomarkers, and novel ways of managing disease.
• In “Caring For Your Mental Health,” Vanessa Zinke, LCSW, Sandra Cobb, Shonda Berry, and Tomisa Starr discussed how they find grace in the midst of living with an autoimmune disease. From learning to listen to your body to monitoring negative self-talk, this panel shared personal insights for coping with the mental health effects of autoimmune disease.
• “In Communicating Effectively with Your Healthcare Team,” Juana Mata discussed the importance of being your own advocate and shared tips from her own experience as a patient. Dr. Kara Wada shared best practices for making the most out of a medical visit:
  • Be prepared. Take some time to think about what you want/need to accomplish ahead of time, what questions do you have? Can you bring someone with you?
  • Own your medical history. Your medical records are yours — ask for copies, bring them with you.
  • Get comfortable with being uncomfortable. Unfortunately, we are asked to function within a dysfunctional system and a world that wasn’t created with chronic invisible illnesses in mind.

Participants Share Heartwarming Reactions

“The empathy and genuineness from each of these speakers is truly felt.”

“Great summit! Best I’ve ever participated in. Thank you so very much!”

“This is always such a valuable event!!”

“Let Us Carry the Spirit of the Event with Us”

The third annual Autoimmune Community Summit was a resounding success, leaving attendees inspired, informed, and equipped to face the challenges of autoimmune diseases with strength and resilience. We hope that attendees felt the power of community and the potential for positive change in the world of autoimmune health.

In her closing remarks, President and CEO Molly Murray shared a heartfelt reflection on the two days, touching on major themes of the event:

• Knowledge and Empowerment: We’ve gained cutting-edge knowledge that empowers us to make informed health decisions and fosters optimism for the future.
• Community and Support: Our connections created during this conference are invaluable, forming a support network that extends far beyond these virtual walls.
• Inspiration and Resilience: Personal stories remind us that autoimmune conditions don’t define us; they empower us to overcome adversity and chase our dreams.
• Advocacy and Awareness: Our unwavering commitment to raising awareness and advocating for improved healthcare remains strong. It’s time to put our knowledge into action.
• Self-Care and Wellness: Prioritize physical and mental well-being, incorporating learned strategies into daily routines, and seek support when needed.

Molly concluded by saying, “I want to emphasize that our journey doesn’t end here; it is an ongoing one. The connections made and knowledge gained during this conference are just the beginning. Let us carry the spirit of this event with us as we navigate what lies ahead.”

Missed Out? Access the Recorded Sessions Now!

Couldn’t attend the summit or want to revisit the sessions? Good news! All sessions were recorded and are now available for viewing. Simply register for the event at go.autoimmune.org/Summit23 to access this invaluable resource.

Thank You to Our Speakers

Olivia Casey, Senior Director, Programs, Autoimmune Association
Bridget Chapital, Founder, Hypothesis Haven Science Club
Sandra Cobb, Patient Advocate
Cheryl Crow, Occupational Therapist & Founder of Arthritis LIFE
Anna Ellis, Autoimmune Association Board of Directors and Associate Director of Patient Affairs & Advocacy at X4 Pharmaceuticals
Sheilah Gauch, LICSW, M.Ed., Patient Advocate and Principal & Clinical Director at the Dearborn AcademyAdvocate
Tonya Jones, Patient Advocate and Founder and CEO, United Together Lupus Foundation
Victoria Killian, Patient Advocate and Disability and Chronic Illness Advocate & Educator Patients Rising Now
Amanda Krzepicki, Policy Director, Autoimmune Association
Indie Lee, Autoimmune Association Board of Directors and Founder of Indie Lee & Co.
Nina Luning Prak, MD, PhD, Professor of Pathology and Laboratory Medicine at the Hospital of the University of Pennsylvania, University of Pennsylvania and Chair, Autoimmune Association Medical and Scientific Advisory Board
Peter Maag, CEO, Kyverna Therapeutics, Inc.
Shadé Mallory, Patient and Outreach Coordinator at the Autoimmune Association
Juana Mata, Patient Advocate and Founder of Looms for Lupus
Colin McConnell, Autoimmune Caregiver, Artist, Philanthropist, Entrepreneur, and Community Advocate
U.S. Representative Mariannette Miller-Meeks
Molly Murray, Autoimmune Association President and CEO
Tiffany Pannell, Patient Advocate
Sue Peschin, President and CEO, Alliance for Aging Research
Jason Resendez, President and CEO, National Alliance for Caregiving
Ellen Rudolph, Founder and CEO, WellTheory
Sloane Salzburg, Vice President, Horizon Government Affairs; Board Member, Autoimmune Association
Rachel Schade, Patient Advocate
Lila Shahani, Patient Advocate
Saimun Singla, DO, Rheumatologist, Rheum to Grow
Lilly Stairs, Autoimmune Association Board of Directors and Founder of Chronic Boss Collective & Patient Authentic
Tomisa Starr, Patient Advocate
Emily Taylor, Vice President of Advocacy and Engagement, Solve M.E.
Lee Thomas, Patient Advocate, News Personality, and National Diversity Speaker
Brian Ung, Patient Advocate
Kara Wada, MD, Assistant Clinical Professor at the Ohio State University and Founder of Crunchy Allergist LLC
U.S. Representative Brad Wenstrup
Vanessa Zinke, LCSW, Co-founder and Psychotherapist at Reaching Resilience Therapy
Neeyaz Zolfaghari. Integrative and Holistic Nutritionist, Unspoken Nutrition

Thank You to Our Sponsors

Argenx
Bristol Myers Squibb
Eli Lilly
EMD Serono
GSK
Horizon
Immunovant
Janssen
Mallinckrodt
Novartis
The OCEAN Study
Pfizer
The RESET-RA Study
Takeda
Viridian