July FOP Bereaved Families Virtual Meeting
Thursday, July 16, 2026 at 07:00 PM Central Time (US & Canada)
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 16, 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.July FOP Caregiver Support Group
Tuesday, July 21, 2026 at 12:00 PM Eastern Time (US & Canada)
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.
Hobbies and Recreation: Community Panel | Advocacy Series July Webinar
Wednesday, July 22, 2026 at 12:00 PM Eastern Time (US & Canada)
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.12th Annual Midnight Sun Color Run
Saturday, July 25, 2026 at 03:00 PM Alaska
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.
Passion & Purpose In Daily Life | Advocacy Series July Webinar
Sunday, July 26, 2026 at 02:00 PM Eastern Time (US & Canada)
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.Research Fireside Chat with Dr. David Goldhamer
Tuesday, July 28, 2026 at 12:00 PM Eastern Time (US & Canada)
Dr. David Goldhamer at the University of Connecticut has worked in FOP research for decades, studying the biological processes that control muscle development and regeneration, and how muscle cells and tissues get reprogrammed to form bone in FOP. To do this, he uses specialized mouse models (created by his lab) that develop FOP. Using these FOP mice, he can study the cells and biological signals responsible for the abnormal bone growth in FOP.
With his ACT for FOP grant from the IFOPA, Dr. Goldhamer explores the effect of FOP on muscle repair and regeneration in response to injury. In FOP, the normal muscle-healing process can be hijacked and redirected toward making new bone instead. Dr. Goldhamer aims to determine whether the stem cells responsible for muscle regeneration are malfunctioning or receiving the wrong signals from nearby cells at the site of the flare-up that could be driving them to form bone.
Understanding this will help us better understand how heterotopic ossification (HO) starts and may eventually guide new treatments.Join us at Noon EDT/18:00 CEST for a Research Fireside Chat with Dr. David Goldhamer, who was recently awarded an IFOPA Accelerating Cures & Treatments (ACT) for FOP grant, and this informal conversation — moderated by IFOPA Research Director Mark Hamilton, PhD — is your chance to learn more about his work and ask your own questions.Fireside Chats are informal, conversational sessions designed to give the FOP community direct access to the researchers working on your behalf. They're a great opportunity to hear the science in plain language and engage directly with the people behind it.
Register here, and you'll have the opportunity to submit questions in advance so Dr. Goldhamer can address what matters most to you.
Moving to Keep Eli Moving
Saturday, August 01, 2026 at 12:00 PM Eastern Time (US & Canada)
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>
