January 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.
Create Your Personalized Facebook Profile Photo for Rare Disease Day

On February 28, the world will be celebrating Rare Disease Day ! Join the movement by sharing your story and telling your friends who you love with FOP. 

We've created an FOP-branded profile photo for you to use on your Facebook page. If you would like to have your or your loved one's photo added, send a high resolution photo to Nick Mahler at   nick@crookedguy.com and let him know which photo frame you would like to use (“I’m 1 in 2 million” or “I love someone rare”) . He will send it back ready to post to Facebook. 

Keep an eye out on the   IFOPA's Facebook page   for ways to get involved throughout the month. Be sure to use these hashtags with your Rare Disease Day posts: #ShowYourRare , #1in2million and #cureFOP . Thanks for helping spread the word about FOP!
Save the Date for Brand New IFOPA Webinars

In February, the IFOPA will begin offering free webinars, providing you the opportunity to learn about FOP-related topics from the convenience of home. 

February 7 - The IFOPA and You
Learn about the latest IFOPA programs and services, and how you can get involved. Presented by Michelle Davis, Executive Director, and Anitha Devadason, Program Manager serving patients and families.

February 15 - Clinical Studies and Trials: Your Choice, Your Role, Your Responsibility
Adam Sherman, Director of Research Development & Partnerships, will provide an overview of the drug development and approval process and the role that clinical studies and trials play. You'll learn more about how to select which study or trial is right for you. 

All webinars will occur at Noon ET/11 am CT/10 am MT/9 am PT and last for one hour. Webinars will be recorded so if you're not able to participate when they are offered, you can go back and watch them at your convenience. 

Watch your email for registration opening soon! 

Questions? Send an email to together@ifopa.org
Team #cureFOP to Ride in the Million Dollar Bike Ride

The IFOPA is pleased to announce our participation in the 2018 Penn Medicine Orphan Disease Center's Million Dollar Bike Ride.

Join Team #cureFOP on May 20 as we work to fund a brand new FOP research grant.
Big Dreams, Lofty Ambitions

Claudia Cabrera has big dreams and ambitions. She is currently studying at Bunker Hill Community College, and plans to obtain her bachelor’s degree in Biology before going on to medical school.

"I want to become more involved in raising awareness around the signs of FOP, so there will be fewer misdiagnoses.”

The IFOPA Welcomes New Board Members

In December 2017, IFOPA members elected two new Board members serving from Jan. 1, 2018 to Dec. 31, 2019 - Kristi Gonzales and Megan Olsen. Current Board members Joe Martucci, Nancy Sando and Carol Tilley were re-elected to serve another term.

The IFOPA is also pleased to announce the 2018-19 officers: 
Amy Gordon, Chair
Kristi Gonzales, Vice Chair
Karen Munro, Secretary
David Rocke, Treasurer
Chris Bedford-Gay, Executive Committee Member-at-Large

Get to know Kristi, Megan and all of the IFOPA's Board members >