January 2020 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.
Regeneron Releases Phase 2 Trial Results and Shares Next Steps

Regeneron Pharmaceuticals recently published results from LUMINA-1, a clinical trial that investigated the safety and effect of garetosmab (also named REGN2477) in people with FOP. Results from the Phase 2 trial showed that garetosmab achieved an approximately 90% reduction in NEW heterotopic bone formation as measured by two imaging techniques . The majority of adverse events were judged to be mild to moderate in severity. You can read more about the LUMINA-1 clinical trial on  clinicaltrials.gov or about the results with garetosmab from  Regeneron’s press release . 
 
As noted in the press release, Regeneron plans to review the clinical data results with regulators to determine next steps for developing this investigational therapy. Plans for a pediatric trial are also underway.
Celebrate Rare Disease Day with an IFOPA Research Webinar

87 cents of every dollar raised by the IFOPA funds programs and services for the FOP community with the majority of those dollars funding research grants, the FOP Registry and other research tools, as well as meetings that foster research collaboration.

Join us February 28 at Noon EST for a webinar with Adam Sherman, IFOPA's Director of Research Development & Partnerships , to learn about all of the ways the IFOPA advances FOP research in the United States and around the world.

Please note: This webinar is about the IFOPA's research work; not the clinical trials being conducted by pharmaceutical companies.

It's Not Too Late Make a New Year's Resolution to Improve Your Independence

Did you make your New Year's Resolutions yet? Consider making a goal for yourself that includes improving some aspect of your independence!

Remember, the Harold & Elaine Kaplan Quality of L.I.F.E. (Living Independently with Full Equality) Award provides each person with FOP a grant of $1,500 USD that can be used on different items that improve health, welfare and independence.

Take Part in the Resilient Living Educational Series!

Do you aspire to practice better self-care and do your best to cope with the challenges that life throws your way in the new year?

Join Family Services Manager Hope Newport each month in 2020 to learn about one of the Resilient Living habits. These habits are valuable tools to recovering from stress!

FOP Registry Rewards Making a Difference

In October, the IFOPA launched the FOP Registry Rewards Program. This program rewards new and existing FOP Registry participants with a $25 Visa gift card when they submit their completed Enrollment and Follow-up Surveys .

The goals of this program are not only to thank Registry participants for the time and effort they put into completing their Registry surveys, but to also increase the number of surveys in the Registry, which will ultimately help researchers better understand FOP.

Successful Biobank Collection Event in Florida

The IFOPA’s FOP Biobank was welcomed with great enthusiasm at this year’s FOP Family Gathering in Orlando, Florida.  As of today, the FOP community has made a total of 95 donations to the Biobank. At this year’s Gathering, we also reached a major milestone with our first series of repeat donors . Receiving multiple donations over time from the same participant greatly increases the value of our Biobank. 

Thanks to the families who generously donated to the FOP Biobank, we are now well on our way to having an invaluable resource for future FOP researchers.

One Family’s Friends Become Friends of the FOP Family

When Joe Martucci and John Rendinaro were in high school, they never could have imagined that years later they would be working together to fight a rare disease. But that’s where life took these friends.

Save the Date for These Special Upcoming Events

The 19th annual Comedy Show fundraiser will be held on Saturday, February 29 , 2020 at Pollard Hall in Mountainside, New Jersey . Reservations are required! For questions or reservations, contact Gary Whyte at [email protected]
The 13th annual Joshua's Future of Promises Bingo for a Cure will be held at the Allentown Fairgrounds Agriplex Hall on Sunday, March 22 , 2020 in Allentown, Pennsylvania . This incredible event has raised over $1,000,000 to benefit research and family support programs. For more information, click here or contact Chrissy Flexer at [email protected]