Hayden's Hope

Tuesday, August 15, 2023

In Pursuit of a Cure 2023


Hayden's life was permanently altered when he was diagnosed 
with FOP in 2002 at the tender age of 2-1/2.  

FOP is one of the rarest, most disabling genetic conditions known 
to medicine.  It occurs in approximately 1 in 1 million 
people world wide.

It causes bone to form in muscles, tendons, ligaments and other 
connective tissues rendering the person immobile.  
Essentially frozen within a second skeleton.

In 2006, the FOP gene was discovered by the 
FOP Lab at U of Penn.  Since then, the IFOPA has been working 
towards finding multiple therapies for those with FOP.

Please help us, Hayden and the FOP community on our 
relentless mission to find a therapy and a cure for FOP 
by donating to the In Pursuit of a Cure Fundraiser. 

Please join us at an exclusive LIVE research webinar on August 30th. 
There will be three time options available so you can hear updates on 
gene therapy research and learn about research priorities.  
This is an exciting opportunity to learn how your donation is 
making an impact.  


Sunday, September 18, 2022

In Pursuit of a Cure

In Sept 2002, Hayden was diagnosed with FOP, a rare debilitating bone condition that will eventually leave him frozen in his own body unless a cure is found.  At the time there was no cure or therapies available.  In 2006, the gene mutation which causes FOP was discovered and since then the race has been on to find a treatment and a cure.  While there are several drug trials going on right now which, if FDA approved, will provide a treatment for FOP.  It is gene therapy that will ultimately be the cure for Hayden and the rest of the FOP community.

For the third year in a row, our FOP community will come together for In Pursuit of a Cure- an annual global event that supports the IFOPA's first-ever gene therapy research program and helps support the advancement of clinical trial research.  Please join me in supporting this program by donating here.  

Monday, February 28, 2022

Rare Disease Day 2022

      rare/re(ə)r/ Adjective

1.) marked by unusual quality, merit or appeal, distinctive
2.) seldom occurring or found uncommonly

Typically when we think of something as rare, 
we think of something special, 
unique or hard to come by.

Something spectacular such as the Hope Diamond,

 or discovering long, lost ancient ruins

or even a fossilized sand dollar 
such as the one I found recently on the beach.

Rarely, no pun intended, do we like to associate 
the word "rare" with an illness. 
However there is nothing spectacular about 
receiving a diagnosis of a rare disease. 
It is, in a word, devastating.
FOP is a rare disease.

Less than 5% of rare diseases have 
any therapies or treatments.
And 70% of genetic rare diseases 
like FOP start in childhood

There are over 6,000 identified rare diseases with no cures.

300 million people have a rare disease.  
That is more than all those with 
Cancer and AIDS combined.

FOP affects 1 in a million people, 
so its not just rare,
it's ultra-rare.

Finding funding for research, advocacy 
and community outreach 
for these orphan diseases, 
as they are called, is beyond challenging.

However within this rare community of people,  
there is something special about a rare disease, 
the people.

These special people are… 

...the scientists who study it,
Researchers in the FOP lab at University of Pennsylvania.
Meiqi Xu, Drs Frederick Kapkab and Eileen Shore

...pharma companies who pursue the discovery of 
treatments and drug trials
There are currently 9 ongoing drug trials for FOP treatments.  

...the patients and families who live with it
Hayden Pheif, skiing in 2008, at the Far West
Disabled Sports Center in Alpine Meadows, CA

...the amazing people who have only yet learned of FOP and
 will go to "great lengths" to fundraise for research
which will help to find a cure
Team "Girls with Grit" ran the Napa Valley Ragnar
(36 hour - 206 Mile) Relay in September to as a fundraiser
for Hayden's Hope

...Jeannie Peeper, who stood up to FOP by starting the  
International FOP Association 25 years ago. 
Her goal was and is to raise awareness, 
provide outreach to families and those effected with FOP 
as well as to create a 501c to support fundraisers for research.  

Jeannie Peeper with Dr. Frederick Kaplan,
head of FOP research at U of Penn, at the 25th
anniversary IFOPA celebration.

These people are rare in a very special way.
They give us hope.

Even though the people afflicted with rare diseases 
create a very large community, 
their conditions remain largely unknown 
to the vast majority of the world population.  

Today, February 28th, 
Global Rare Disease Day.

This day was created in the United States 
by the National Organization for Rare Diseases (NORD) 
to raise awareness and 
increase advocacy for these special diseases,
as well as to provide hope to the 
patients and families afflicted by them.

Saturday, June 8, 2019

T minus 24 hours - 2019 Haydens Hope Dipsea Race

In 24 hours, team Hayden's hope will be running the Dipsea Race in honor of Hayden and to raise awareness and funds for research.  Please consider donating by clicking here.

Monday, May 27, 2019

Hayden's Hope Dipsea Race

2019 TEAM Hayden's Hope
Liz Lawler - Carol Tagliaferri - Kelly Bates - Lora Anderson - Megan Olsen

Sunday June 9th, Team Hayden's Hope will be running the Dipsea Race in honor of Hayden 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, February 4, 2019

FOP National Organizations

Although FOP is a rare disease, affecting only approximately 2500 world wide, the work of the International FOP Association is supported and complemented by national organizations across the globe. Organizations are listed below, along with website, social media pages and email contact, if available. While these organizations are not formally affiliated with IFOPA, we are deeply grateful for the work they do outside of the USA to serve the FOP community and connect individuals and families with resources and other FOP patients on a regional and national level.

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.