FOP Connection: November 2024

November 2024 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

A Tribute to Nearly 30 Years of Service to the FOP Community

On November 13, Amanda Cali, mom to Ian who lives with FOP, announced that she will be retiring from her life's work with FOP. She will remain on the Tin Soldiers Advisory Board and the Cali family will continue their philanthropic support of Tin Soldiers.

We want to take this opportunity to express our deep gratitude to Amanda for nearly 30 years of dedicated service to the FOP community.

IFOPA's Executive Director Michelle Davis shares a grateful tribute to Amanda on behalf of the IFOPA's Board of Directors and staff.

Read the tribute now >

With Grateful Hearts

As we think about you, our FOP community, we have so much to be grateful for

We hope you've been following the IFOPA's Facebook, Instagram, Twitter and LinkedIn for our daily gratitude posts.

Coloring can have many benefits for children and adults, including:

Stress and anxiety reduction: Coloring can help relax the amygdala, the part of the brain that controls fear. It can also help reduce thoughts and improve mindfulness.
Improved sleep: Coloring can be a relaxing bedtime ritual that doesn't involve electronics, which can disrupt melatonin levels.
Improved focus: Coloring requires focus, but not so much that it's stressful. It can help open up the frontal lobe, which controls problem-solving and organization.
Improved motor skills and vision: Coloring requires both hemispheres of the brain to communicate.
Enhanced mindfulness: Coloring can help you be more present in the moment and pay attention to details.
Reduced body aches, fatigue, and depression: Coloring can help reduce the risk of these health problems.
Improved immune function: Coloring can help improve immune function.
Lower blood pressure: Coloring can help lower blood pressure.
Tranquility: Coloring can help more guarded people find tranquility.

As we celebrate the Thanksgiving holiday in the United States, we wanted to share this gift with you — this year's With Grateful Hearts logo as a coloring page. When you finish, we'd love to see your work. Share your coloring page with us by emailing it to together@ifopa.org

Thank You and Stay Tuned

Thank you so much for your feedback during the IFOPA's recent strategic planning data-gathering activities. The global FOP community contributed through:

111 written survey responses
35 one-on-one interviews
5 focus groups

The Strategic Planning Committee, and soon the IFOPA's Board of Directors, will review your anonymous feedback. In early January, we will share more about what we've heard from you and how it's helping us plan our strategic priorities.

THANK YOU again for taking the time to share your feedback with us!

US FOP Families Can Still Enroll in a First-of-Its-Kind FOP Study

US families are invited to take part in a research study on health insurance knowledge and challenges that will tell us – for the very first time – how US FOP families are insured.

The results of this study will help us:

Advocate for better health and dental coverage
Develop educational programs
Support the creation of patient assistance programs

Eligible participants will complete the 30-minute survey and receive $50. If you’re selected for a follow-up interview, you’ll receive another $100. The interviews are being conducted on a very limited basis, and participation is first come, first served. If you are interested, sign up now.

This study is supported by grants from IPSEN and Regeneron Pharmaceuticals.

Get more information and start your survey >

ANDECAL Trial Open at University of California, San Francisco

The āshibio ANDECAL trial for andecaliximab is now recruiting 12 patients who are ≥ 12 years of age.

The trial is open to individuals with any FOP-causing mutation (variant) in the ACVR1 gene. Participants need to have had evidence of FOP disease activity within one year of the screening visit.

The first trial site that is recruiting is the University of California, San Francisco. Watch our social media and eNewsletters for announcements of other sites in the United States opening up for recruitment.

Learn more about the ANDECAL trial >

Virtual Scientific Symposium for Researchers and Doctors

The Rare Bone Disease Alliance is hosting its fourth Rare Bone Disease Alliance Scientific Symposium on November 21, with this session focused on fibrodysplasia ossificans progressiva (FOP).

Among rare diseases, the FOP research space is one of the most active and exciting. With the first-ever treatment for FOP approved in select countries and five active FOP clinical trials, there is still an abundance of preclinical research with the potential to be translated into safe and effective new medicines.

In this “deep dive” into FOP, you’ll hear from researchers and experts at the University of Pennsylvania, Massachusetts General Hospital & Harvard Medical School, Amsterdam University Medical Center, Children's Mercy Hospital and the IFOPA.

This Scientific Symposium is designed for researchers and doctors interested in rare bone diseases.

Learn more and register >

The Giving Season is Just Around the Corner

As the Thanksgiving holiday approaches, it’s a reminder that the giving season is just around the corner. This is the time of year to reflect on the many blessings in our lives and express gratitude by helping others in need. At the IFOPA, we know the power of compassion and how generosity transforms lives, and we invite you to remember us and FOP families around the world as you plan your year-end giving.

This is also a good time to remember there are alternative ways to help the IFOPA continue our vital work beyond cash donations, including making a Qualified Charitable Distribution (QCD) from your IRA or giving gifts of stock.

Every contribution, in whatever form, ensures the IFOPA can keep advancing research, supporting families and raising awareness worldwide.

Contact Cathryn Roys, FOPA’s Fundraising and Special Projects Manager, with questions about making your year-end gift: cathryn.roys@ifopa.org

Celebration and Support During National Family Caregivers Month (NFCM)

During NFCM, led by Caregiver Action Network, we seek to recognize and support family caregivers by:

Raising awareness
Educating communities
Increasing support for caregivers
Celebrating the efforts of family caregivers around the world and in our FOP community

Being a family caregiver is no small feat, and your health and happiness matter, too. But how do you find time for yourself while balancing it all?

Here are ten easy, everyday tips from the Caregiver Action Network to help lighten your load and keep self-care on your to-do list.

The National Organization of Rare Disorders' (NORD's) Caregiver Respite Program provides financial assistance to enable caregivers a break to attend a conference, event, or simply have an afternoon or evening away from caregiving.

IFOPA resources tailored to your role:

Join our next FOP Caregiver Support Group on December 17. Register now >
Become a member of online support groups like Support4FOP on Facebook. Learn more >
Visit our IFOPA Caregiver Resources pag e >

3 Virtual Events You Don't Want to Miss in December

If you missed the Denver Family Gathering, we are bringing three of our most popular sessions from the Family Gathering to the global FOP community.

Join us for the Virtual FOP Community Gatherings, coming December 5-7. All virtual sessions are Noon ET / 18:00 CET.

Thursday, December 5: Join Dr. Bob Pignolo as we listen to a recap and have an opportunity to ask questions related to his popular talk “Therapeutic Horizons for FOP: Targets, Treatments and Challenges.”

Friday, December 6: Join Family Services Coordinator Melissa Davis, OTR/L, as she shares how FOP community members have adapted their diets and tips on food preparation to accommodate limited jaw movement.

Saturday, December 7: Join Family Services Manager Hope Newport in an interactive workshop to practice creating and sharing a story when advocating for support in a variety of settings.

Learn more and register for one or multiple sessions>

Each session includes AI (artificial intelligence) translation in 55 languages so our FOP community from around the world can join us.

Recordings from 2024 FOP Family Gathering Coming Soon

We understand that for those unable to travel to Denver to participate in the 2024 FOP Family Gathering, access to watch recordings of the general session presentations is a high priority.

We are thankful to have a skilled videographer who helped us capture these sessions. To make sure they are shared in the highest quality possible, we are currently doing some necessary editing.

We aim to have the recordings posted on youtube.com/ifopa by the first week of December.

Now Available! New Resources on Skin Health

We're grateful to the incredible Dr. Patricia Delai, dermatologist and Chair of the International Clinical Council (ICC) on FOP, for her work in supporting the FOP community, especially in the area of skin health.

Our most recent educational handout was created in collaboration with Dr. Delai to help families quickly find helpful information to navigate skin health and FOP.

The handout outlines 3 key factors impacting skin health including:

Skin issues caused by medications
Skin issues caused by FOP
Skin issues that appear to be more common for people with FOP

Learn about these factors, how to care for your skin and find other skin health resources >

FOP and The Flu

Influenza (“the flu”) is a contagious viral infection that affects the respiratory system, including the throat, nose, and lungs.

It is a major cause of morbidity and mortality worldwide and is especially dangerous for those with FOP. People with FOP and their caregivers also need to be careful about how they get the flu vaccine.

Learn how to keep you and your family safe this flu season and see the ICC's vaccine recommendations >

Missed It?

New Resilient Living Series Resource Now Available

We were excited to shift our focus in the "Daily Practices to Improve Your Body and Mind" series to look at the power of our breath in regulating our nervous system.

Our wonderful presenter Stephanie D'Angelo from the Polyvagal Institute, shared how accessible our breath can be to serve us as a tool to support coping in areas including:

Pain
Relaxation response
Our view of ourselves as active participants in managing FOP

Watch the recording to learn more >

New Instagram Page

The Ability Toolbox now has a dedicated space on Instagram! We'll be sharing more community-identified tools from the Ability Toolbox Online Guidebook and introducing you to tools and resources from other Instagram influencers in the accessibility, occupational therapy (OT), and disability communities.

If you are on Instagram, give us a follow instagram.com/ability_toolbox