December 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.

Clinical Trials   |  FOP Registry | Quality of L.I.F.E. Awards

Make Double the Difference Your year-end gift to the IFOPA can now go twice as far thanks to a $60,000 match from a generous friend! When you make a tax-deductible contribution by December 31, it will be matched dollar for dollar. Please take advantage of this amazing match and give before 2018 ends to double your support of our FOP community!  Double your gift now >

Connect. Learn. Grow.  The recent FOP Family Gathering in Baltimore was an incredible weekend of connecting, learning and growing.  Check out a few highlights >

FOP Biobank Launches at Family Gathering, Now Available for All to Participate  FOP researchers use biosamples (blood, urine, saliva, or “baby teeth”) to make new discoveries in FOP, to test new drugs, and to look for new markers of disease (called biomarkers). However, a lack of freely available samples poses a challenge to advance FOP research. People with FOP and anyone that supports FOP research can overcome this challenge, and help advance new research, by donating biosamples to the IFOPA's newly launched FOP Biobank. Your de-identified samples will be shared with researchers across the world who are working to help FOP patients.  Find out how you can participate >

Make Your Shopping Count Through AmazonSmile  Even though time to finish your holiday shopping is running out, you can still benefit the IFOPA when you shop with   AmazonSmile .  Make the IFOPA your charity of choice and shop now >

Donate Your Vehicle to #cureFOP The IFOPA is pleased to offer a brand new way for you to take part in our shared vision to #cureFOP. Donating your car, truck, van, SUV, boat, motorcycle, ATV, RV, trailer or airplane to support the IFOPA has never been easier!  Simply visit our  vehicle donation page  to donate a vehicle, or call 855-500-RIDE (4733) and a donor representative will guide you through the donation process. Not ready to donate your vehicle yet? You may have family, friends or co-workers who are. Be sure to share about this new IFOPA giving opportunity on social media. Contact  Cathryn Roys, Community Fundraising Manager , for details on how to share this giving opportunity. Start your donation >

During this holiday season, we reflect on the FOP community – FOP families and friends; researchers, clinicians and industry professionals; fundraising coordinators; and our many generous donors. We are thankful you're with us in the fight to #cureFOP and wish you and yours a blessed Holiday season. May it be full of all the things you value and love.  The Board of Directors and Staff of the International FOP Association

Guiding One Another Along - Meet One of the IFOPA's Founders, Jack Sholund Proud of how the IFOPA has grown as a network of families who support each other, Jack Sholund attended the first FOP symposium in 1991 and made friendships that still continue today. He appreciates the opportunity to learn from one another and encourages others to seek out families with a child or adult with FOP and share information.  Read Jack's story >

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