Hayden's Hope

Wednesday, May 30, 2018

Hayden's Hope 2018 Fundraiser

grit
/ɡrit/

noun
noun: grit
  1. 1.
    small, loose particles of stone or sand.

    "She had a bit of grit in her trail shoe after running the Dipsea Race."


  2. 2.
    courage and resolve; strength of character.

    "Hayden displays the true grit in the face of a rare debilitating disease."

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2018 TEAM Girls with Grit
Megan Olsen - Lora Anderson - Liz Lawler - Monika Kaplan - Mimi Hahn - Carol Tagliaferri

Sunday June 10th, the Girls with Grit will be running the Dipsea Race in honor of Hayden's Hope and the Int’l FOP Association to raise awareness and funds research for a debilitating disease called Fibrodysplasia Ossificans Progressiva or FOP.

Hayden was diagnosed with FOP on Sept 11, 2002. This genetic disease affects 1 in 2million people. He is one of 800 people in the world with the condition.  Slowly his muscles are turning to bone, creating a second skeleton, rendering him immobile.

Since Hayden was diagnosed in 2002, the gene that causes this horrific condition was discovered in 2006, multiple pharmaceutical companies have started collaborating to find a therapy. Currently, there are three active and recruiting drug trials for a potential therapy.  This is an amazing accomplishment considering that most genetic conditions never find a therapy.  There are no genetic conditions that have a cure.

Please consider donating to the IFOPA in honor of Hayden’s Hope.  Click here to donate on line. Or if you wish to send a check, please make the check out to the International FOP Association and send to Hayden’s Hope / IFOPA c/o Megan Olsen 164 Tamalpais Avenue, Mill Valley, CA. 94941.

The International FOP Association is a 501c3 and has received a gold rating for transparency from GuideStar.


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