Your June 2026 FOP Connection

June 2026 eNewsletter

This eNewsletter contains news and information for anyone living with FOP and those who care for them. This includes family and friends, caretakers, physicians, researchers and IFOPA supporters.

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Clinical Trials | FOP Registry | Quality of L.I.F.E. Awards

Creativity, Curiosity & Connection: Hobbies in the FOP Community

Living with FOP can change many aspects of daily life, but it doesn't change the desire to create, learn, and connect. Meet Erin Danzer and Joe Suchanek, two FOP community members who show how curiosity and creativity can spark purpose, build confidence, and open new doors—even while living with FOP.

Erin channels her creativity through writing, artwork, and handmade friendship bracelets that have become beloved keepsakes at IFOPA Family Gatherings. Joe has explored podcasting, YouTube, and 3D printing, eventually creating adaptive tools that could support others in the FOP community.

Their stories remind us that hobbies are about so much more than passing time—they're about expression, connection, and resilience.

Read the full story >

Read the Full Story

Listen to Our Latest Advocacy Series Podcast:
Exercise and FOP

In this episode of the Advocacy Series podcast, Melissa Davis sits down with FOP community member Daniel Licht and his personal trainer, Joel Beasley, to discuss the impact of exercise and recreation on Daniel's life with FOP. They explore how staying active has created community, purpose, and joy for Daniel.

Listen now >

Please note: This podcast is for informational purposes and does not constitute providing medical advice, training, or professional services. Always consult with a licensed doctor before starting any exercise regimen.

Listen Now

Pursuing Joy: How Families Living with FOP Navigate Hobbies and Recreation

Hobbies and recreation play an important part in everyday life. They provide opportunities for connection, community, purpose, self-expression and fun. While FOP can create challenges related to safety, mobility and accessibility, individuals living with FOP continue to find meaningful ways to participate in activities they enjoy.

For many families, youth sports and activities can feel particularly overwhelming. Questions about safety, inclusion, physical limitations, and social opportunities often require careful consideration. Yet as the experiences in this blog post demonstrate, participation is rarely an all-or-nothing decision. With thoughtful planning, communication, and adaptations when needed, many children and young adults with FOP can pursue the hobbies and recreation that bring them joy.

In recognition of the 2026 FOP Advocacy Series theme, we spoke with members of the global FOP Community about their experiences. Their stories highlight the creativity, determination and advocacy that make participation possible and show the impact it has on their lives.

Read about children with FOP and recreation >

Read About Children with FOP and Recreation

Exciting FOP Clinical Trial Updates Shared at ENDO

It was a big weekend for the FOP community at ENDO 2026, the leading global meeting on endocrinology research and clinical care hosted by the Endocrine Society.

Regeneron Pharmaceuticals shared data from its Phase 3 OPTIMA clinical trial, which included 63 people with FOP ≥18 years of age through 56 weeks of treatment (21 on placebo, 19 on 3 mg/kg garetosmab, 23 on 10 mg/kg garetosmab).

Incyte and Mirum Pharmaceuticals shared data from their Phase 2 PROGRESS clinical trial, which included 63 people with FOP ≥12 years of age through 48 weeks of treatment (24 weeks of placebo-controlled treatment, then 24 weeks open-label zilurgisertib).

Learn More About These Important Trial Updates

Share Your Experience with Early Clinical Trial Stoppage

Over the last decade, there have been multiple clinical trials for people living with FOP to participate in. Several of those trials have ended early:

Ipsen: MOVE (age 14 and under cohort)
Regeneron: LUMINA-1
Ipsen: FALKON

Understanding the impact of early trial stoppage is important to improving support for individuals and families navigating clinical research. Whether participation ended because a study was discontinued or you chose to withdraw from a trial, your feedback can help us better understand the emotional, practical, and healthcare-related challenges that may arise.

If you or your child has experienced an early stoppage in a clinical trial, we encourage you to take a few minutes to share your perspective. Your experience can help inform future efforts to better support participants and families throughout their clinical trial journey.

Respondents with verified FOP, who complete 80% of the survey, will receive a $50 gift card for their time.

Complete the Survey Today

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.

With his recent ACT for FOP grant from the IFOPA, 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 July 28 at Noon EDT/18:00 CEST for a Research Fireside Chat with Dr. David Goldhamer, moderated by IFOPA Research Director Mark Hamilton, PhD. It's your chance to learn more about his recently awarded IFOPA Accelerating Cures & Treatments (ACT) for FOP grant 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 now, and you'll have the opportunity to submit questions in advance so Dr. Goldhamer can address what matters most to you.

Meet Manuel Robert, IFOPA Board Member

We're excited to introduce you to the dedicated leaders guiding IFOPA's mission in 2026!

Meet Manuel Robert, member of the IFOPA Board of Directors. Manuel lives with FOP in Argentina and has been volunteering with the IFOPA since 2014, when he first participated in a DDF patient panel.

He brings a unique perspective shaped by over a decade of engagement with the organization—and he's not afraid to ask the critical questions that keep IFOPA accountable to the community. He shares what drives his commitment to advancing FOP research, why asking tough questions matters, and a surprising passion—juggling!

Watch Now

Each month, we'll introduce you to another member of our Board of Directors so you can get to know the people working tirelessly behind the scenes to support our community.

Stay tuned for next month's feature!

YOU Can Help Make the 2027 FOP Family Gathering a Success

The 2027 FOP Family Gathering, taking place June 24–26, 2027, is sure to be a memorable experience as we head to Philadelphia, Pennsylvania!

While several exciting topics and sessions are already being planned, we want to hear directly from community members who plan to attend in person to help shape the rest of the agenda. Your ideas, experiences, and perspectives can help make this gathering meaningful for everyone in attendance.

If you are interested in contributing ideas or serving on the planning working group, we encourage you to join the conversation.

Complete the Interest Form

Donor-Advised Funds: Put Your Charitable Dollars to Work

Have you directed a gift to a donor-advised fund (DAF) but haven't yet recommended a grant to IFOPA? You've already received the tax benefit—now it's time to put those charitable dollars to work!

Recommending a grant to the IFOPA is simple: log into your portal, recommend a grant using IFOPA's name and EIN, and you're done.

As FOP Grandparents Doug and Nancy Lady shared, "We know the IFOPA is putting donations to good use, so we are delighted to recommend gifts to them through our donor-advised fund."

Don't let your charitable dollars sit idle—direct a gift to IFOPA today and help advance FOP research, family services, and awareness worldwide. 💙

Learn more about donating through a donor-advised fund >

Questions? Contact Charles Hunsaker, Philanthropy Manager, at charles.hunsaker@ifopa.org or (816) 200-0082.

Learn More About Donating Through a Donor-Advised Fund

Harold and Elaine Kaplan Quality of L.I.F.E. Award Applications Accepted July 1-31

The Harold & Elaine Kaplan Quality of L.I.F.E. Award application period opens July 1. If you need adaptive equipment to make living with FOP easier, gather the information for your application now.

The Harold and Elaine Kaplan Quality of L.I.F.E Awards is a $1,800 USD grant for individuals with FOP aimed at improving independence in everyday life.

Awards can be used to purchase adaptive equipment, for example, a toilet riser, shower chair, or long-handled brush. Awards can also be used towards home modifications, such as a wheelchair ramp or a bathroom remodel.

Anyone with FOP can apply, regardless of age or where they live in the world.
Applications will be awarded based on available funds. Recipients will be notified in August 2026.

Applications are accepted twice a year (January and July). If you have questions about the L.I.F.E. Awards, contact Family & Provider Support Coordinator Melissa Davis, OTR/L, at melissa.davis@ifopa.org or +1 605-877-5289.

Learn more about the Harold and Elaine Kaplan Quality of L.I.F.E. Awards >

Harold and Elaine Kaplan Quality of L.I.F.E. Awards Applications Open July 1

Voting for the Ability Toolbox "Homemade Tools" Contest is NOW OPEN!

Homemade tools celebrate the idea that innovation doesn’t require expensive equipment or advanced technology. Sometimes, it’s a spatula, a fork, and a roll of waterproof tape.

We’re excited to celebrate the creativity and innovation of the FOP community by recognizing homemade tools that support independent living through the Ability Toolbox Homemade Tools Contest.

Homemade tools are so important because they can be customized to meet a person's specific needs and may be more accessible in areas with limited retail options.

Cash prizes will be awarded to the winners in two categories:

Most Creative Homemade Tool: 1st ($200), 2nd ($150), 3rd ($100)
Most Useful Homemade Tool: 1st ($200), 2nd ($150), 3rd ($100)

Only individuals with FOP and their direct family members/caregivers can vote. You're not only voting, but you're also learning about tools that might benefit you or your loved one!

Voting is only open through June 30, so vote now. Please consider the item's usefulness and the creative process used to develop the tool when voting.

Questions? Email Melissa Davis, IFOPA Family & Provider Support Coordinator, at melissa.davis@ifopa.org or contact her via text or WhatsApp at +1 (605) 877-5289

The IFOPA would like to thank The Radiant Hope Foundation for their generous financial support of this contest.

Vote by June 30 for the Homemade Tools Contest

Test Your Knowledge with FOP & IFOPA Kahoot! Trivia

Join us for a fun and interactive Kahoot! trivia game designed especially for the FOP community.

Kahoot! is an online quiz platform where participants answer multiple-choice questions in real time using a phone, tablet, or computer. Players earn points for correct answers and quick responses, making it a fun way to learn and connect with others in the community.

After creating your free account, you can play in multiple ways:

To play in a group, click "Host live" and share the QR code and game PIN with friends
To play on your own, click "Play solo"

Questions? Reach out to Hope Newport, Family Services Manager at hope.newport@ifopa.org or +1 (785) 294-1607.

Over the coming months, we look forward to sharing a number of different Kahoot! trivia quizzes focused on topics such as FOP, the IFOPA, available resources, community programs, and more.

Whether you are newly connected to the community or have been involved for years, everyone is welcome to play, learn something new, and enjoy a little friendly competition.

Explore the first of our Kahoot! quizzes >

Explore the First of our Kahoot! Quizzes

New Resource Available on the Impacts of FOP on Hearing, Speech and Swallowing

Families navigating FOP often have questions and concerns about how the condition can affect hearing, speech, swallowing, and other ear, nose, and throat (ENT) functions. Our newest resource in the FOP Care Management Hub was created to help families better understand these challenges and feel empowered to advocate for the best possible care and outcomes.

This easy-to-navigate resource explains how these systems may be affected by FOP and highlights the key specialists who can help support a comprehensive multidisciplinary care team.

A downloadable PDF version of the information is also available to save, print, or share with members of your care team.

Explore and bookmark this valuable new resource >

Explore and Bookmark this Valuable New Resource

Celebrating FOP Friends' Incredible Family Meeting!

UK FOP organization FOP Friends' recent family meeting, held May 15-17 in Manchester, England, brought together 130 attendees from 15 countries—including 24 FOP families, 3 POH (progressive osseous heteroplasia) families, 21 healthcare professionals, researchers, and staff—all gathering to share presentations, clinical appointments, stories, laughter, connection, and so much more.

Featuring:

Gaming sessions from Adaptive Gaming
Kintsugi workshops where attendees learned the traditional Japanese art of repairing broken pottery with gold, transforming its fractures into beauty and making the object even more stunning than it was before
Therapy animals from Noah's A.R.T. (1 gecko, 1 bearded dragon, 6 guinea pigs, 8 mice, and 1 dog named Alfie)

FOP Friends created a space where our community could truly come together, and we're grateful for the incredible work they do to strengthen our global community.