Hayden's Hope

Monday, September 22, 2014

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

Click here to donate to the Hayden's Hope Girls with Grit Fundraiser.

    2014  H A Y D E N’ S   H O P E   
            F U N D R A I S E R

  girls with grit

On Sept 19 & 20th fourteen amazing women participated in the Ragnar 24 Hour Relay San Francisco to Napa Valley on behalf Hayden's Hope.

Left to right - back row
Donna Cannon (our wonderful pacer who helped us when we weren't running so well), Bryne Powell, Lora Anderson, Deena Pontius, 
Louise Roberts, Monique Lecomte, Caroline Dowd, 
Monika Kaplan, Erin Wendt

Left to right - Front row
Julie Neff, Bonnie Carlson Kaypaghian (our amazing "Fairy Ragnar-Mother" and Van Driver) , Carol Tagliaferri, Liz Lawler (instigator and Team Captain), Megan Olsen, Oscar the dog - Team Mascot

Girls with Grit placed 5th in our Division!!             

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: 
101 Sunnytown Road, Suite 208
Casselberry, FL  32707

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