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.
Don't Miss the 2017 FOP Family Gathering -
Registration Closes November 20
Have you made plans to join the IFOPA and other FOP families from across the country in San Francisco yet? Twenty-six families have already registered.
Monday, November 20 is your last chance to register.
This year's Gathering will focus on:
Living with FOP and how to manage FOP day to day
Connecting FOP'ers and families
Sharing how the IFOPA can be helpful to people with FOP and their families
With two drugs now registered for worldwide FOP clinical trials, you probably have lots of questions. Clinical trial participation is a commitment that should not be taken lightly and there are many factors for you and your family or other caregivers to consider.
Learn more about clinical trial participation and the two FOP clinical trials that will soon begin recruitment worldwide.
3rd Drug Development Forum a Tremendous Success
The 3rd Drug Development Forum brought together academic researchers, biotech and pharmaceutical company representatives, clinicians, International President's Council leaders, as well as families that are members of FOP Italia on October 13-14 in Sardinia, Italy. Over 30 FOP "talks" were given during the two-day meeting and focused on wide-ranging topics from basic FOP biology to new therapeutic approaches to updates in FOP clinical development.
Learn more about the FOP Talks given by FOP experts from around the world.
Chris Bedford-Gay Shares His Talk from the FOP Drug Development Forum
One of the highlights of the Drug Development Forum is when patients and families get to share their experiences about living with FOP, as well as their hopes for future treatments. Chris Bedford-Gay, dad to Oliver and founder of FOP Friends®, opened this year's Forum.
Tuesday, November 28 is #GivingTuesday, a global day of giving. We'll be coming together as a community to raise support for the IFOPA's Quality of L.I.F.E. Awards. Note the date, spread the word, and be sure to visit our
Facebook page throughout the day for stories of how these gifts of independence make a difference for individuals with FOP.
Give While You Do Your Holiday Shopping
This holiday season, shop for those you love while giving back to #cureFOP. The IFOPA is registered with a variety of shopping programs which allow you to purchase gifts, and a percentage is donated back to the IFOPA. Participating retailers include Amazon (through the AmazonSmile programa), Gap, Toys 'R' Us, Land's End and more.
