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. 

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.

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, July 9, 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

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. 

Register here

Advocacy Series Webinar | Hobbies and Recreation: Community Panel

Wednesday, July 22, 2026 | 12:00-1:00 EDT / 18:00-19:00 CEST

In this 2026 Advocacy Series community panel, you'll hear from FOP community members Brian Harwell (Ohio, USA), Erin Danzer (California, USA), Danie Coyne (Colorado, USA), Alice Flournoy (Georgia, USA), and Jack Fegan (Australia). They will share the hobbies and activities they enjoy most, and how these passions have helped them build rich, well-rounded lives while living with FOP.

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.

Hosted by Lucy Mae McConnell and Jade Hill, in honor of Jade's daughter, Dilyn, who lives with FOP.

Saturday, July 25, beginning at 3 pm

Tickets are available from $10 to $50 per person, and sponsorships are available for $300.

More Information and Tickets  

Register here

Join us for our second live event of the 2026 Advocacy Series, focused on finding purpose and passion through hobbies and recreation while living with FOP.

Advocacy Series Webinar: Finding Purpose and Passion Through Hobbies & Recreation with FOP

Sunday, July 26, 2026 | 2:00-3:00 EDT / 20:00-21:00 CEST

Join Dr. Sumira Riaz, Founder and Health Psychologist at Unboxed Psychology, for an engaging session on cultivating purpose and passion through hobbies and recreational activities while living with FOP. Together, we’ll explore our fundamental need for social connection and how meaningful activities can foster fulfillment, purpose, and a sense of belonging.

The webinar will also examine how procrastination can prevent us from trying new hobbies or reconnecting with activities we once enjoyed, along with practical strategies to overcome these barriers. Participants will leave with actionable ideas and next steps to help begin—or re-ignite—their journey toward more purposeful, passion-filled living.

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 Speaker

About Dr. Sumira
Dr. Sumira Riaz is the Founder of Unboxed Psychology and a Health Psychologist dedicated to helping individuals cultivate wellbeing, resilience, and meaningful connection. Through her work, she supports people in exploring practical strategies to improve quality of life, overcome barriers to engagement, and reconnect with activities that foster joy, purpose, and belonging.

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.

Moving to Keep Eli Moving: Badger 100 Mile Fundraiser

Join endurance athlete and longtime FOP advocate Kelly Griego as he takes on the Badger 100 Mile race on August 1, 2026, to raise $10,000 for the International FOP Association (IFOPA). Inspired by his friend Eli Wallace, who lives with FOP, Kelly has spent the past eight years connecting endurance racing with fundraising to support research and the search for a cure. Every donation helps move research forward and brings us one step closer to a future where people living with FOP can keep moving.

#MovingToKeepEliMoving

To support Kelly's run click here>