Register here

The Peer Support Group for Adults with FOP meets monthly from Noon to 1 pm EDT / 18:00 to 19:00 CEST.

The group provides an opportunity to connect and share experiences, suggestions and techniques to navigate challenges brought up in group discussions.

Counseling Psychologist Dr. Al Freedman, who also had a child with a rare disease, will offer suggestions and techniques to help navigate challenges that are brought up in group discussions.

Due to the conversational nature of the meeting, participants must be able to speak and understand English. The meeting lasts for 60 minutes.

Register here

The Caregiver Support Group meets monthly from Noon to 1 pm EDT / 18:00 to 19:00 CEST.

Whether you're a parent or a partner, caring for a loved one with FOP is a unique experience that few can relate to. You deserve a community that understands your life and encourages you through the highs and lows.

Join our monthly Caregiver Support Group and connect with fellow caregivers to get questions answered, share your experiences, and support each other as you support your loved ones.

Each session is moderated by counseling psychologist Dr. Al Freedman, whose son lived for 26 years with a rare disease.

Due to the conversational nature of this meeting, participants must be able to speak and understand English. The meeting lasts for 60 minutes. 

The FOP Bereaved Families Group is an opportunity for those who have lost a friend or loved one to FOP to come together virtually to support each other.

Join us on Zoom, Thursday, May 28, at 8 pm ET.

Sign up and submit any comments or suggestions in advance by emailing [email protected]

Due to the conversational nature of the meeting, participants must be able to speak and understand English.

Register here

Join us for our first live event of the 2026 Advocacy Series, focused on Gaming and FOP.

Advocacy Series Webinar: Gaming and FOP

June 16, 2026 | 12:00-1:00 EDT / 18:00-19:00 CEST

Join Drew Redepenning from Gaming Readapted, and FOP Community Members Justin Heneke and Joe Suchanek as they discuss the role video and computer games play in their lives, share tips and tricks for adaptive gaming solutions, and answer community questions.

The Advocacy Series helps people and families overcome barriers to receiving the support, access, care, and resources they need by learning from other FOP community members and discussing practical tools for better problem-solving across multiple areas of life with FOP.

Advocacy Series Community Panels and Webinars will be hosted on Zoom video conferencing, and AI translation will be available in 60+ languages (see the complete list here).

Meet the Speakers

About Drew
Drew Redepenning is a Biomedical Engineer, Assistive Technology Practitioner, and Resident Physician who has been involved in assistive technology for over eight years, in both clinical and research capacities, specializing in environmental controls and adaptive video gaming. Drew is currently a Physical Medicine and Rehabilitation resident physician at the University of Pittsburgh Medical Center, where he has worked to expand their adaptive video gaming services and serves as the co-director of the Empowered Esports program. He has contributed to the development of national educational resources and has presented multiple national educational sessions on adaptive video gaming. He formerly worked as the Lead Assistive Technology Specialist at Courage Kenny Rehabilitation Institute in Minnesota and currently contracts as an Assistive Technology Specialist for Technology for Home.

About Justin
Justin Henke is a software engineer by day, and a bookworm, eSports coach, and gamer by night. He lives with FOP, but that does not mean it defines who he is. Whether it be board games, card games, or video games, he enjoys competing, exploring, and co-operating in both physical and digital mediums. Some of his go-to video games include Super Smash Bros, Counter-Strike, Legend of Zelda, Factorio, and Mario Kart. His other hobbies include building and tinkering with computers, helping his family and church with everything technology-related, and singing in a community choir.

About Joe
Joe Suchanek has been gaming since he was young. He used a two-handed controller until he couldn’t anymore at around the age of ten. Since then, he has been playing one-handed with any console. His console of choice is Xbox, since he is an achievement hunter. No game is off limits, and he loves a challenge! 

About the 2026 Advocacy Series

Hobbies bring joy, community, and purpose to our day-to-day lives. While FOP can limit participation in some activities, it shouldn’t stop you or your loved one from enjoying recreation or participating in meaningful hobbies.

This year, the theme of our 2026 Advocacy Series is Hobbies & Recreation. Throughout the summer, you can look forward to a variety of webinars, community panels, and podcast episodes showcasing members of our FOP community.

They’ll share firsthand knowledge about finding activities that match their interests and physical limitations, along with practical advice for navigating mobility and accessibility challenges.

You’ll also hear how to advocate for and educate others about FOP, and how recreational activities have positively impacted their daily lives.