International FOP Association

In the first of our two sessions with Elena Pomana, we focused on the importance of identifying your values. Elena introduced values, how they are formed, and how they can be a critical part of motivating our actions, especially during times when challenges arise that make following our initial intentions more difficult. Don't miss this chance to watch the recordings of both of Elena's sessions about the impact of perspective and intention in our everyday activities. And be sure to download the "Unlock Your Inner Strength" workbook available from the same link. 🩵 Access Elena's resources here: https://lnkd.in/dKNehpSK

We are excited to share that Dr. Ellen Elias will be joining us for the Family Gathering to share insights on coordinating complex care for those living with FOP. During her career, she has cared for 8 patients of varying ages with an FOP diagnosis 🤩 Dr. Elias directs the Special Care Clinic at Children’s Hospital Colorado, the largest clinic of its kind in the US. The Special Care Clinic serves children with medical complexity with both primary care as well as coordinated, consultative care for genetic, medical and developmental disorders. We are so grateful to have Dr. Elias speaking in Denver in just a couple of weeks. Register before the October 23 deadline: ifopa.org/familygathering #2024FOPGathering

Congratulations to Svenska FOP-föreningen, who celebrated their 20th anniversary this summer by hosting an FOP Seminar June 29-30 for patients and healthcare professionals in Stockholm. The Swedish FOP organization supports families not only in Sweden, but also Denmark, Finland, Norway, Estonia, Latvia, Lithuania and Iceland. A special thank you to Founder Marie Fahlberg, mother of Hugo who lives with FOP, for all you have done to serve the FOP community in these countries and around the world ❤️ Learn more about Svenska FOP-föreningen at https://lnkd.in/dZWCsDUz

Jack Fegan has been shooting amazing wildlife pictures with his drone. Drone photography allows him to capture pictures in places he might not otherwise be able to due to mobility restrictions (and safety!) Check him out on social media and follow his adventures on Facebook at Jack's Movement and Instagram @jacks_wildlifeaus Jack's 2025 Wildlife Calendar will be available for purchase soon. Our FOP community members are always up to REALLY cool things 😍 Each month, we'll highlight members to celebrate their accomplishments 💚 💙 🌍 Way to go, Jack! If you want to suggest a shout-out to feature, get in touch with Family Services Coordinator Melissa Davis at melissa.davis@ifopa.org

On May 29, 2024, Blueprint Medicines published the results of a study in Science Translational Medicine whose data suggests that BLU-782 may be a candidate for the prevention of heterotopic ossification in FOP. Read an alert about the study results: https://lnkd.in/dZgmkSEb BLU-782 is now known as fidrisertib and is being tested in the Phase 2 FALKON clinical trial sponsored by Ipsen. More information: https://lnkd.in/dbzzC6rj

The October edition of FOP Connection is OUT! 🤩 Check your email if you're subscribed to our newsletter, otherwise, read it here: https://lnkd.in/dmVeknwq In this month's edition, read about: - Dr. Alberto Hildalgo-Bravo's fulfilling career focus on FOP - Open surveys for FOP patients and families - Success for the first-ever In Pursuit of a Cure Day of Giving - US Family Gathering deadlines - Upcoming Resilient Living Series Session featuring breath and the parasympathetic nervous system And much more 🔥 Share your thoughts in the comments 👇🏽 and if you haven't already, sign up for our eNewsletter: ifopa.org/connect 💚 💙 🌍

📣 Family Gathering Attendees: If you would like to take advantage of our special hotel rate of $129/night, you need to reserve your hotel room NO LATER than this Wednesday, October 15. Book your room at the beautiful Denver Marriott Westminster: https://lnkd.in/e98zFehB Staying at the conference hotel helps provide a convenient and immersive Family Gathering experience with: 🩵 On-site restaurant and bar, where connection and conversations can continue after programming has ended 🩵 Indoor pool and lounge area to unwind and burn excess energy in an enjoyable space (the pool has an accessible lift) 🩵 Beautiful meeting rooms steps away from the elevators which take attendees back up to their rooms if they ever need a break 🩵 Close proximity to restaurants, pharmacies and entertainment There's still time to register and join us in Denver: ifopa.org/familygathering Questions? Email familygathering@ifopa.org #2024FOPGathering

The EveryLife Foundation's Young Adult Rare Representatives (YARR) program elevates the next generation of rare disease advocates, instilling confidence to grow their skills and foster their individual advocacy journeys. YARRs are highly motivated young adults age 16 to 30 living in the United States with a personal connection to the rare disease community, either as a patient, caregiver, family member, or close loved one/friend. We are proud of FOP community member Erin Danzer, who is a YARR, and we encourage more FOP community members to get involved to connect with other like-minded young adults and impact public policy in the rare space. The YARR application is open year-round and reviewed once a month. The next application deadline is October 17. Learn more: https://lnkd.in/eZ2AfF8 Apply at: https://lnkd.in/g_qcABj Questions? Laura Romano, YARR Program Manager, at lromano@everylifefoundation.org

A highlight of previous Family Gatherings has been the small group discussions that take place between peer groups within our community 🥰 We're excited to see groups of moms, dads, adult women and spouses/significant others (just to name a few) connecting for meaningful conversations at this year's Family Gathering. There's still time to join us! Register by October 23: ifopa.org/familygathering #2024FOPGathering

Reminder to mark your calendars and join us for the next part of our Resilient Living series: A Look at Breath Through the Polyvagal Lens 🌬️ October 25 at 11:00 am ET / 17:00 CEST Join Stephanie D’Angelo, Director of Community Development at the Polyvagal Institute, as we explore how the parasympathetic nervous system and breath interact to impact our physical AND psychological state. 📌 Register today: https://lnkd.in/d-q5KkUE The IFOPA's Resilient Living Program is a 3-part series to help community members transform daily activities into opportunities to nourish their bodies and minds! To learn more visit: https://lnkd.in/dGTtW8n3