The Autoimmune Registry hosts a monthly webinar to bring together patient advocacy groups related to autoimmune diseases. This month, we welcomed John Muller, Founder of GettingUp.org, who discusses building a 100% volunteer-driven nonprofit focused on research funding for rare neuromuscular diseases, and shares his personal experience as a patient advocate living with Inclusion Body Myositis (IBM).

Topics covered include:

• Running a lean, all-volunteer 501(c)(3) with no salaries or overhead
• Funding research partnerships, including work with the University of Kansas neuromuscular team
• Patient-led data tracking: building a personal health dashboard covering bloodwork, DNA variants, diet, supplements, sleep, and movement metrics
• Participation in clinical trials (stem cell, serolimus/rapamycin, and the Biocenix wearable movement study)
• Running public service campaigns and community surveys in underserved areas
• Fundraising through gala events, golf tournaments, book sales, and an AI-generated music catalog distributed across streaming platforms
• Running public service campaigns and community surveys in underserved areas
• Discussion with attendees on clinical trial design, exclusion criteria, and barriers to patient participation

About the Speaker: John Muller is the founder of GettingUp.org, a nonprofit dedicated to raising awareness, funding research, and inspiring hope for patients and families facing rare conditions. Diagnosed first with ALS and later correctly identified as having IBM, John has participated in three clinical trials and is the author of Barriers to Breakthroughs, a book blending personal experience with scientific exploration. He brings a 45-year career in sales and building materials to his work as a patient advocate.

GettingUp.org is a 100% volunteer-driven 501(c)(3) nonprofit founded to raise awareness, fund innovative research, and inspire hope for people living with rare diseases such as Inclusion Body Myositis (IBM).

Through community events, advocacy, and education, GettingUp.org works to turn barriers into breakthroughs- empowering patients, caregivers, and researchers in the urgent search for better treatments and cures.

In Barriers to Breakthroughs, John blends personal experience with scientific exploration, weaving a narrative that is both deeply human and powerfully informative. His mission is clear: to ensure that dignity, resilience, and advocacy shine even in the face of daunting odds.

“Never give up, never surrender!”