October 2018 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.
2018 FOP Family Gathering - Register and Book Your Hotel by October 22

The 2018 FOP Family Gathering is one month away! Don't forget to make your hotel reservation by October 22 to ensure that you get the group rate of $199/night. If you are registered but do not complete hotel reservations before this date, you will not qualify for the group rate. Register for the Family Gathering here and/or book your hotel by contacting us at familygathering@ifopa.org by October 22. All reservations must be complete by 5 pm ET .

We're also excited to reveal a few fun updates. As we continue to celebrate the IFOPA's 30th anniversary, we wanted to share that the theme for this year's FOP Family Gathering Dinner and Dance on Saturday evening will be Denim and Diamonds .

While we won't be giving away diamonds (the contemporary anniversary gift for the 30th year mark) we are excited to celebrate the evening with some fun diamond-themed decorations and accessories.

We're also pleased to share the official Family Gathering hashtag for this year: #fopfamily18 . Please feel free to use this hashtag when you post on Facebook, Twitter or Instagram about the approaching Gathering. 
Blueprint Medicines Presents Preclinical Data Supporting the Development of an FOP Treatment Drug, BLU-782

We are pleased to share this news delivered by Blueprint Medicines last month in Montreal at the 2018 American Society of Bone and Mineral Research Meeting (ASBMR). The title of their talk was "BLU-782, a highly selective ALK2 inhibitor, designed to specifically target the cause of fibrodysplasia ossificans progressiva."
University of Michigan Hosts First Unifying FOP and Traumatic HO Symposium

On September 14, Dr. Ben Levi, University of Michigan, hosted the first  Unifying FOP and Traumatic HO Symposium,  bringing together research and clinical experts in FOP and trauma-induced heterotopic ossification. 

30 Years of Togetherness - Meet One of the IFOPA's Founders, Shay Williams

Shay Williams and his family were able to find a support system through the creation of the IFOPA. He reflects fondly on meeting Jeannie for the first time, and meeting other families affected by FOP.

He encourages others who are new to the reality of FOP to  “reach out to other families who have been dealing with living with this condition."

FOP Connect: A Peer Mentor Program

The FOP Connect Peer Mentor Program aims to connect people with FOP, family members and caretakers with other like-minded individuals to foster friendships with a focus on support, growth and development.

To learn more about who is eligible for FOP Connect and how you can select your mentor,  visit our webpage or email FOPConnect@ifopa.org.

Please be mindful that the FOP Connect: Peer Mentor Program is a support service, and is not staffed by medical professionals. A mentor does not offer medical advice.