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Welcome to the fall issue of the FOP Connection.

Dear FOP family and friends,
The big news this quarter is that Clementia Pharmaceuticals
clinical trial for Palovarotene began to recruit participants on
July 14th. Palovarotene is being tested to fnd out whether it
helps prevent FOP bone from forming during a fare-up. I invite
you to read about the clinical trial, if you havent already, and
if you or your family member has FOP, I especially encourage
you to learn more.
Also in this issue is information about the Quarterly in Honor
Report. This report will be provided when a donor makes
a donation in the honor of a person with FOP. Previously,
donations made in honor of a FOP person were not shared
unless the donor requsted the honoree to be notifed. We want
to give honorees the opportunity to be more proactive to thank
those who donate in their honor. Dont forget to give us your
updated contact information so that you can receive
this report.
Find lots more recent news from the IFOPA & FOP
community:
Reports from the frst FOP meeting in Russia and the
summer FOPev meeting in Germany
Creative family fundraisers around the world are
providing monies for FOP research, IFOPA programs,
and LIFE Award scholarships.
Inspiring articles about some of our FOP members
The IFOPA is recruiting nominees for the 2015 - 2016
two year term on the Board of Directors. Are you
interested?
Its that time of year to renew your IFOPA membership.
You can now renew online. Find details in this article
International Fibrodysplasia Ossificans Progressiva Association
Fund Research, Find a Cure, Support Families
Visit www.ifopa.org to learn about Fibrodysplasia Ossifcans Progressiva
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membership article.
Finally, a reminder that your gifts of $300.00 or more
will qualify you to receive a Boy of Bone limited edition
book.
Thank you for your interest in IFOPA news and your continuing
support of the IFOPA. We need each of you, and with your
help we will pursue our mission to fund research to fnd a cure
for FOP while supporting individuals and their families through
education, public awareness and advocacy.
Best regards,
Marilyn Hair
Chair, IFOPA Board of Directors
International Fibrodysplasia Ossificans Progressiva Association
Fund Research, Find a Cure, Support Families
Visit www.ifopa.org to learn about Fibrodysplasia Ossifcans Progressiva
9-4-14