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.


Monday, April 23, 2018

Celebrating 30 years of the IFOPA



Every year, April 23th is the FOP Awareness Day.  This year is even more special because it marks the 30th anniversary of the founding of the International FOP Association by Jeannie Peeper.
Click here to read more about how this amazing women started it all with some letters.

Tuesday, February 27, 2018

RARE Disease Day













Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

It is estimated that FOP affects about 3,500 people worldwide, or approximately one in two million people. Such statistics may be better grasped by the following example: if a large football stadium holds 100,000 fans, one would need to fill nearly 20 football stadiums to find one person who has FOP. At the present time, researchers are aware of approximately 800 people throughout the world who have FOP.

Wednesday, January 24, 2018

Hayden to enroll in the Clementia Drug Trial.

John and I are so excited about this. Hayden is enrolling in the drug trial at UCSF in 2 weeks. 
Fingers crossed.