grit
/ɡrit/
noun
- 1.small, loose particles of stone or sand.
"She had a bit of grit in her trail shoe after running the Dipsea Race."
- 2.courage and resolve; strength of character.
"Hayden displays the true grit in the face of a rare debilitating disease."
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.