Loading...

Tuesday, August 19, 2014

2014 Hayden's Hope Fundraiser Presents "Girls with Grit"

        F U N D R A I S E R
                    presents

  girls with grit
















             Girls With Grit Team            
          Team Leader: Liz Lawler
                   Megan Olsen
                  Monika Kaplan
                 Carol Tagliaferri
                      Julie Neff
                  Caroline Dowd
                     Erin Wendt
                    Bryn Powell
                  Deena Pontious
                   Lora Anderson

Date: September 19-20th
Twelve amazing women will be running the
Ragnar 24 Hour Relay from San Francisco to Napa Valley on behalf Hayden's Hope.

Hayden’s Hope raises funds to benefit the International FOP Association (IFOPA) for FOP RESEARCH & AWARENESS.  The IFOPA is a 501c3 non profit organization.

What is FOP?
FOP is one of the rarest genetic conditions known to medicine.  Currently there are 285 confirmed cases in the United States and 800 confirmed cases worldwide. This disabling genetic condition causes bone to form in muscles, tendons, ligaments and other connective tissues, progressively restricting movement and forming a second skeleton that imprisons the body in bone.

Fundraising for FOP
The annual budget of the FOP Research Lab is $1.5 million.  About $500,000 of that amount is provided by the IFOPA and is raised by donations and family fundraisers such as Hayden's Hope.

Facts about Hayden, FOP Research 
& the IFOPA
September 2002 – Hayden is diagnosed with FOP
November 2003 – First Hayden’s Hope Fundraiser for FOP Research is held in Sausalito raising $75K
April 2006 - The ACVR1 gene that causes FOP, discovered at the FOP Lab, is announced in Nature Genetics Magazine
June 2013 – 25th anniversary of the founding of the International FOP Association
June 2014 - Hayden's Hope receives IFOPA Jeannie Peeper Award for Outstanding Community Involvement
July 2014 – Clinical Trail announced for Clementia Pharmaceutical’s Palovarotene.  


You may also donate by mailing a check made payable to "IFOPA".
In the memo write “Hayden’s Hope Girls With Grit”.

Mail Check to: 
IFOPA
101 Sunnytown Road, Suite 208
Casselberry, FL  32707