In 2024, the Foundation established a Disability Task Force joining together staff and a select group of patient advocates with varying conditions, levels of disability, and advocacy experience. The Disability Task Force is a roundtable for patient advocates to share their experiences, ideas, and make recommendations to help us identify key areas of focus to guide our advocacy efforts and create disability-focused resources and programming for our patient community.
Current Projects
- Expanding the Adaptive Devices page to include more devices and a tips & tricks blog series
- Virtual Hill meetings with Members of Congress to share patient stories and discuss disability
Meet the Task Force!
GBS|CIDP Foundation Walk Chair (Chicago) and Liaison, CIDP patient since 2018.
CIDP patient living with physical limitations. I enjoy helping others and working with the Foundation educating others about this disease. “Forward is forward no matter how long it takes.”
Mike, 36, has navigated the challenges of MMN for over half his life, navigating and adapting to motor impairment impacts in education, employment, recreation, housing, transportation, and relationships. Mike has a fulfilling career in market analytics, is married with two children, and completed a century bike ride in an earlier phase of MMN. He uses rollators in the great outdoors and a stair cane to navigate architecture, lives in single-story housing, and loves seating options with higher heights, speech recognition, keyboard shortcuts, and ergonomic aids/electronic gadgets that help out with daily life. Mike is passionate about universal design, adaptive technology, and accessible workplaces.
During my career as a clinical scientist, I traveled throughout the United States and the world conducting clinical trials. Extreme physical fitness was also a huge part of my life. I climbed mountains, ran marathons, competed in triathlons, skied and cycled cross-country on many continents as well. I worked at almost every Olympics since 1984, conducting banned substance screening for swimmers. That all changed in 2018 when contaminated food caused me to develop Guillain Barre Syndrome. It severely damaged my nerves, left me completely paralyzed and in excruciating pain from head to toe. I thought I was dead. When I found out I was not dead, I prayed that death would soon come. Deep within I had to find the faith to survive. My faith in Jesus Christ and my competitive spirit kicked in and I fought to survive. The road back is long.
Merrilyn was diagnosed with GBS in 2006. She was left with some physical challenges and has bilateral drop foot. Merrilyn wears AFOs (ankle foot orthotics). She walks with a cane and uses a scooter for long distance. She has balance issues and also has some weakness in her hands and wrist.
Hi! I’m Charisma Mangahas! In 2018 I was diagnosed with GBS, and since then I’ve been advocating for mental health and accessibility. I’m a public speaker, and a 2024 graduate from CSULB where I majored in Kinesiology: Exercise Science. My passion is also reaching out to others to engage in storytelling and reminding others the importance of mindfulness and the power of choice. Since 2021, I’ve established my own website called Mindful Lei Thinking where I share my story and let my community gain awareness on GBS, accessibility, and mental health!
Michael’s diagnosis was 10 years ago and until recently, people asked him what he did for a living and he used to say that he organized running races. “If you ask me today what I do for a living, I would tell you that I’m a disability rights advocate.”
Bio coming soon.
