December 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.
Get an Inside Look at the 2019 FOP Drug Development Forum

The IFOPA held its fourth Drug Development Forum (DDF) on November 13-14 in Orlando, Florida. The 2019 DDF attracted participants from 19 different countries around the world. The IFOPA hosts this symposium to bring FOP experts together to discuss the latest research, solve drug development challenges and to strengthen the growing network of research collaborations across the globe.

You're also invited to learn more about each of the FOP Talks that were delivered at the Drug Development Forum.

Get a Glimpse Into the 2019 FOP Family Gathering

The FOP Family Gathering in Orlando, Florida brought together nearly 50 families and clinicians, research and pharmaceutical company representatives from 21 countries. It is the place for families to connect, learn and grow.

Couldn't join us in Orlando? Be sure to save the date for the 2020 FOP Family Gathering in Dallas, Texas on November 19-22.
Make Double the Difference

Your year-end gift will be matched dollar for dollar up to $60,000 by generous friends of the IFOPA! Together, we’re strong and we’ve come so far – but we can’t stop now. Keep the momentum going in 2020 to advance more research, raise more awareness and bring more support to our FOP community worldwide. Make a gift by December 31 that will be doubled and go twice as far to work toward treatments and a cure.

New IFOPA Videos Raise Awareness and Teach About Drug Development and Clinical Trials

Raising awareness is a key part of the IFOPA's mission and we're pleased to now provide a video resource - The Same But Different: A Look at Life With FOP to help kids and teens educate classmates, friends in clubs or at church or synagogue, neighbors or anyone they are interacting with about life with FOP.

Clinical trials are the only way drugs for FOP will ever be approved. So it's important for FOP community members to really understand the drug development process and clinical trials. The IFOPA has produced two educational videos which will soon be translated into multiple languages. Thanks to Regeneron Pharmaceuticals, Ipsen and Blueprint Medicines for underwriting these important community resources.

If you have questions about drug development or clinical trials or would like additional awareness tools, please contact us at
IFOPA Store Stocked With Lots of New Items

#cureFOP gear is a great way to spread FOP awareness. To help you do that the IFOPA Store has been restocked with lots of new items. From fleece jackets, sweatshirts, beanies, copper tumblers and super soft blankets to popsockets, reusable stainless straws, lapel pins and license plate covers. Adult and youth sizes available.

A Father and his Company Give to Advance Research

The IFOPA is excited to announce a very special $50,000 gift that will benefit FOP research. This generous donation was made in the fall of 2019 by Tage Hansen and his business partners Stinus Lilleore and Thomas Poulsen along with their company Thyborøn Skibs og Motor A/S, a Denmark-based entity specializing in ship and fishing fleet repair.

Introducing the Ability Toolbox Program

The Ability Toolbox: Everyday Tools for Independent Living Program is here to assist you with your adaptive equipment needs to stay as independent as possible during your daily routines. We can message, email, speak on the phone, or even video conference to problem solve any challenge you are trying to overcome.

Give the Gift of an Unwanted Vehicle

With the end of the year quickly approaching, it’s a great time to make a vehicle donation through Cars2CureFOP. This is an easy way for you to get rid of an unwanted vehicle and turn it into a donation that benefits individuals with FOP and their families. The IFOPA accepts cars, trucks, boats, RVs and other vehicles through Cars2CureFOP. Give the gift of more support to our FOP community and get a tax deduction gift for yourself.