Hayden's Hope

Wednesday, November 14, 2018

27th Annual Research Report on FOP

The 27th Annual Report is Now Available!

Each year, the Center for Research in FOP and Related Disorders at the University of Pennsylvania issues its annual collaborative report on FOP research. The 27th Annual Report written by Drs. Fred Kaplan, Eileen Shore and Mona Al Mukaddam is now available. 

Download the report for the best interactive reading experience. The arrows at the top allow you to flip through the document; the link in the middle at the top of each page returns you to the Table of Contents.

If you would like a print copy of the report, please contact Kamlesh (Kay) Rai at kamlesh.rai@uphs.upenn.edu

Thank you to Fred, Eileen and Mona for writing the report and to the entire FOP research community for all that you are doing to understand more about FOP and develop treatments and, one day, a cure.

Friday, September 28, 2018

Dr. Hsaio's Research Lab

Hsiao Lab at the University of California, San Francisco

The Hsiao Lab at UCSF has a variety of ongoing clinical studies related to the genetics and disease progression in FOP. 

Hormone and Genetic Regulation in Human Disease
Musculoskeletal disorders affecting the bones and joints are a growing health problem. Skeletal birth defects and dysplasias often cause significant physical stigmata and medical complications. In adults, osteoporosis, chronic joint symptoms, arthritis, and fractures lead to significant morbidity. Unfortunately, our ability to effectively prevent or treat any of these skeletal diseases is still very rudimentary. 
Our lab uses the skeletal system as a basis for understanding how hormonal and genetic factors affect human development and disease. By using a wide spectrum of approaches, we hope to develop a broader understanding of the biology underlying skeletal development, develop new models for studying disease pathology, and devise novel therapeutic approaches for treating human skeletal disorders and bone injuries.
Learn about what we do in 46 seconds!
See Ed Hsiao's elevator pitch from the 2013 CIRM Grantee's conference: Edward Hsiao - 2013 CIRM Grantee Elevator Pitch

Wednesday, May 30, 2018

Hayden's Hope 2018 Fundraiser


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."

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.