Epilogue

Hayden Pheif 5.15.2000 - 8.6.24

Hayden Pheif was born on May 15, 2000. In September 2002, he was diagnosed with an ultra rare genetic condition called Fibrodysplasia Ossificans Progressiva, or FOP. He was one of 900 people in the world who had it. FOP causes bone to grow where it shouldn’t so Hayden had to be very careful not to fall or get injured as that would trigger the bone to grow.  He never wanted this condition to define him and he tried to live his life as full as possible.  He played in Little League, he was on the soccer team, he skied and loved to play with friends.   

In March of 2011, Hayden got pneumonia and ended up in the PICU for 4-1/2 months. He came home with a trach and on a ventilator. He still never let FOP define him. Hayden loved sports and enjoyed going to watch his friends play soccer or baseball.  He also was a big Giants and Warriors fan.  He loved going to games and even went to Giants spring training last April.  If you needed sports stats, Hayden was the guy to go to. He knew it all. 

Hayden was an avid gamer. He went twice up to Seattle to watch The International (DODA). He was an amazing multitasker. Gaming on one screen, homework on another, a Giants game on the TV, and Reddit or YouTube on another screen.

Hayden always had a love of art. His grandfather was an architect, Don Olsen of Sausalito, and his father is an engineer, so it must have been genetic. He started taking private art lessons in 2017. And his skill of drawing was honed weekly starting with charcoal, then watercolor and finally oils. 

As an avid movie fan, he watched 1,857 movies — yes, he kept track — he initially thought about being an artist to design for green screen backgrounds in movies.  However, he finally found his calling in architecture and decided he wanted to go to Berkeley. This past year he had at Berkeley was his most independent. His assistants were never allowed in his classes with him and weren’t allowed in crits either. He did as much as possible on his own. He was very excited to go to the launch party for the Student AIA Trace magazine and made his dad wait in the car for him for 3 hours.

Most of all, Hayden loved hanging out with his friends, whether watching sports on TV or grabbing a beer in the city.

Hayden passed away on August 6, 2024 from complications of pneumonia and sepsis.  His entire family was by his side.

You can donate in Hayden's memory at www.ifopa.org/hayden. Your generosity will ensure that his legacy to support research, patient support and family outreach will continue for those that remain.

Hayden leaves behind his mom, Megan, his dad, John, his stepmom, Jen, his younger sister, Elsa, and his dog, Bailey.

Hayden at Elsa's High School graduation.

Hayden in 1st Grade Art Class.

Hayden and Elsa visiting their grandmother in July 2024.

Hayden 5.15.2000 - 8.6.2024

This guy just takes my breath away. So much love. Hayden lived his life with courage, determination, stubbornness against a disease he didn’t ask for, and mostly a beautiful heart.

Yesterday he peacefully left us surrounded by family. I was holding his hand during it all and know that he was so thankful for all of his amazing friends and the life that he was able to live to its fullest with them. He did things I never thought he would be able to do and that is a testament to the power of friendship and his will to be independent.

We will be planning Hayden’s after party - “Haydenfest” - to happen later this year. In the meantime hold your memories of him near and dear to your heart. 

Donations to the IFOPA can be made in his memory IFOPA.org/hayden

Hayden Pheif 5.15.2000 - 8.6.2024

Rare Disease Day 2024

  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, 

is 

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.

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. 

DONATE HERE

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.  

REGISTER FOR WEBINAR HERE

WE ARE RELENTLESS!

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.  

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, 

is 

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.

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.