October 2019 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.
Family Gathering Hotel Reservation Deadline & Preliminary Itinerary Now Available

The deadline to book your hotel at the discounted group rate for the 2019 FOP Family Gathering is October 21. To ensure that all families receive the optimal ADA accommodations and room preference, make sure that you have made your reservation through the IFOPA room block using the link below by the cutoff date. After October 22, you are no longer guaranteed the IFOPA's $199 per night room rate.

FOP Holiday Ornaments Available Now!

Leaves are changing and temps are cooler which can only mean one thing...the holiday season is nearly upon us! This year you can share a message of hope with new FOP holiday ornaments.

Whether it's for your own tree or to give as a gift, an FOP holiday ornament is the perfect way to send a message of hope for those with FOP.  The center ribbon spins inside the silver frame which gives the message "Believe Hope Wish for a Cure for FOP."   Each ornament is $15 plus shipping (international shipping is available).

Introducing Ability Toolbox   A New Program of the IFOPA

You may have previously known it as the Traveling Resource Center or Resource Connect, but here to stay is the newest program of the IFOPA   Ability Toolbox.

With the welcoming of our new staff member Karen Kirchhoff who is devoted to nurturing and growing this incredible resource, Ability Toolbox aims to help promote a problem-solving mindset to overcome the challenges of living with FOP.

International Clinical Council on FOP Launches Website

The International Clinical Council on FOP (ICC) is an autonomous and independent group of 21 internationally-recognized physicians who are clinical experts in FOP from 14 nations and six continents.

The ICC was established to coordinate and consolidate a global voice for the best practices for clinical care and clinical research for people who suffer from FOP. The Council was officially established and its Constitution unanimously ratified on June 21, 2017.

Donate Your Vehicle to Help Support the FOP Community  

Fall into the spirit of giving by donating your vehicle to the IFOPA. It's fast, convenient, and the proceeds from your car, truck, motorcycle, boat, or any vehicle will help fund support programs and research to #cureFOP. And running or not, we'll pick it up for free.

FOP Registry Launches Reward Program for Participants

We are pleased to announce a new reward program for the FOP Registry.  The program started October 1, 2019, and any FOP Registry participant who completes an entire Survey will receive a $25 USD Visa reward.

We know that completing these Registry Surveys takes time. We are offering these rewards as a thank you for the contributions of FOP families to this important research effort. Having information about many FOP patients will help researchers better understand FOP and will assist the development of new treatments. 

This reward program is open to new and existing FOP Registry participants.