2016 IFOPA Year-In-Review
2016 Year-In-Review
 
Happy New Year to the FOP community! As we start 2017 we take a look back on some highlights of our mission-critical work from 2016 and key community events. Your support and participation made these achievements possible. Thank you for your generosity!
January 2016
 
2016 begins with 133 enrollees in the IFOPA's patient registr y. 
February 2016
 

Executive Director Michelle Davis joins the IFOPA. 

On Rare Disease Day, Feb. 29, Clementia announces the 40th and last study participant has enrolled in its Phase 2 clinical trial. 
March 2016

The first FOPAshleysCure Charitable Event takes place in New York City and raises half a million dollars. 
 
Joshua's Future of Promises holds their annual Bingo for a Cure! in Pennsylvania and, once again, raises more than $100,000. 
 
The first Samson Strong 5K Family Friendly Run/Walk in Tennessee raises $15,000. 


April 2016
10th Annual FOP Italia Meeting is held in Livorno, Italy with more than 100 attendees, including members of the International President's Council. 
 
The community raises FOP awareness on International FOP Awareness Day by wearing IFOPA apparel with the message "Have You Seen These Toes?"  
 
In honor of the 10 th  Anniversary of the announcement of the discovery of the FOP gene on April 23, a $10,000 matching gift challenge is announced. By the end of the month, a total of  $35,000 is raised.

May 2016

The Perelman School of Medicine at the University of Pennsylvania releases a press release and editorial about the Center for Research in FOP and Related Disorders' animal study findings on FOP flare-ups and low oxygen.

2nd FOP Friends® UK Conference and Family Gathering is held in Manchester, England with more than 100 families, researchers and clinicians in attendance. 
June 2016

Ten patient families come together for the first-ever Australasian FOP Patient Narrative Gathering in Brisbane, Australia. 

Annual General Assembly of A.E.F.O.P. is held in Madrid, Spain. 

Clementia announces Phase 2 Open-label Extension Trial (PVO-1A-202) has been modified to enroll up to 20 new participants in the Part 2B study. 

Regeneron announces that anti-Activin A antibody, REGN2477, is in a healthy volunteers study in Belgium. 

July 2016

2016  Jeannie Peeper Award Winners announced.

FOP Connection Patient Registry celebrates its 1 st Anniversary with 178 enrollees. 
 
Annual German FOP Meeting is held in Valbert-Meinerzhagen, Germany.

August 2016

IFOPA participates for the first time in Macy's Shop for a Cause and sells nearly 90 shopping passes.  
September 2016

IFOPA presents its Guidelines for Engagement with Pharmaceutical Companies at the Global Genes RARE Patient Summit. 
 
First Physical Freedom Festival in Connecticut raises $40,000 in honor of Holly LaPrade and Jasmin Floyd. 
 
IFOPA awards three new Competitive Research Grants totaling $110,000. 

October 2016

ZipperQ5  raises $130,000 at its annual BBQ Throwdown and Jeep Drawing in Oklahoma.

FOP France holds its first international meeting in Paris, Fance, with 140 attendees, including 23 people with FOP, as well as family members, clinicians, and academic and pharmaceutical researchers. 

7th Annual Lincoln's Legacy Run in Iowa raises more than $30,000 for FOP research.

Clementia and Dr. Fred Kaplan (Global Investigator) present top-line results from the phase 2 trial of palovarotene for treatment of patients with FOP. Results were shared with clinical trial participants, as well as at the FOP Drug Development Forum in October, and then to the FOP community in November. More information is available at this link.

Nearly 175 attendees gather in Boston for the second  D rug Development Forum bringing together  academic and pharmaceutical researchers to address important questions and challenges of therapeutic development for FOP.  

November 2016

FOP Midwest Family Gathering is held in St. Louis  where twenty families  enjoy connecting with old friends and making new connections while learning from top FOP researchers and clinicians. 

#GivingTuesday raises $ 4,000 to fund Quality of L.I.F.E. (Living Independently with Full Equality) Awards.

December 2016

The 21st Century Cures Act is signed into law by President Barack Obama. #curesNOW 
 
FOP Connection Patient Registry ends the year with 191 enrollees.

The FOP community generously gives to the 2016 Year-End Appeal (which includes a $10,000 matching gift)  raising more than $90,000 !

We hope you're proud of all that has happened
in the FOP community in 2016. 
We look forward to partnering with you in 2017!
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