May 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.
Career Talk

 Recently, the IFOPA has been asked to develop a way for the FOP community to share their career advice and experiences with each other. That’s why we’re adding a special career page to our website.

You can participate by filling out a simple profile page and answering a few questions. You’ll be asked to include your basic contact information so that other FOP’ers can get in touch with their questions and keep the conversation going.

Since this is such a prominent area of interest, we’ll also feature articles on careers in the FOP Connection and Community News. If you have ideas for future articles, please let us know .

Watch for the new FOP career content to appear in the weeks ahead!
FOP Family Gathering Needs Survey

The 2018 FOP Family Gathering is just six months away. As we're finalizing meeting logistics before we open registration in July we have a short survey for those of you interested in attending to complete. Take the survey now!

Want to learn more about what you can gain from attending an FOP Family Gathering? Read Nick Mahler's first-hand account in the article below or check out this wrap-up from the 2017 Gathering .
ACT for FOP Grant Program

The IFOPA's grant program (formerly known as the Competitive Research Grant Program) is now known as the ACT for FOP Grant Program .

We're also pleased to announce our fourth request for applications is now open through July 7, 2018. Learn more >
FOP Awareness Day Impact

Thank you for making International FOP Awareness Day a huge success! During the month of April, the FOP community liked, shared and retweeted our posts resulting in more than 81,000 views.

The FOP community was also very generous - holding fundraisers and making donations that totaled $28,018. These generous gifts were matched - raising more than $56,000 to fund research, educate and support families, advocate and raise awareness. The FOP community's generosity in April had twice the impact! #cureFOP
IFOPA Recorded Webinars

In the last couple of months, the IFOPA has offered webinars on:

  • How to decide about participating in a clinical study or trial
  • ABLE savings accounts
  • Clementia MOVE Trial

In case you missed any, you can view all these on our IFOPA Webinars playlist from our FOP News YouTube channel . This playlist will be updated as more webinars are offered, including May 15's Regeneron LUMINA-1 Trial webinar.

In Remembrance - New IFOPA Webpage

The FOP community is a family. To honor and remember our friends and loved ones who have passed on, the IFOPA has created a memorial page .

Please email together@ifopa.org if you would like to include a loved one on this page.
Nick Mahler’s Colorful life with FOP

Although he has faced many obstacles, such as invasive dental surgery, Nick has led an adventurous life with tales of horseback riding, golfing, adapted bike racing and more.