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

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."

-->

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.

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.

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.

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.

FOP Family Gathering

In the beginning of December, the Int'l FOP Association hosted a family gathering in San Francisco. The IFOPA started hosting family gatherings over 10 years ago.  The purpose is to bring together patients and families in a local region, in our case the West Coast, to learn about the latest FOP research, interact with the world's leading FOP clinicians and to connect with other patients, their families and caregivers.

There were people from Seattle, Sacramento, San Francisco, Fresno and Southern California.  We also had some FOP'ers come from other parts of the country.  It was nice to finally meet some of the friends I had made through the IFOPA's Facebook page in person.   Felt like catching up with old friends.

We heard from two different pharmaceutical companies on their current research and drug trails.  Hayden was also able to meet with the researchers and Dr. Frederick Kaplan to talk about his personal journey with FOP.

Hayden's Hope - 2nd Annual Dipsea Run for FOP Research #cureFOP

Please support me on my Dipsea run honoring Hayden and FOP research by donating to the International FOP Association.  Click here to make a donation.

3rd flight of the Dipsea Steps in
Mill Valley

On Sunday June 11th, I will run the 107th Dipsea Race in honor of Hayden, to bring awareness for FOP and to raise funds for research.  The Dipsea Race is a 7.4 mile trail race from Mill Valley through Muir Wood and ending in Stinson Beach.  600+ stairs are scattered throughout the race. 

Fibrodysplasia Ossificans Progressiva is a rare and debilitating genetic condition that essentially turns muscle into bone, creating a second skeleton in the body.  Currently there is no known cure.  There are 800 people in the world affected with FOP -  285 of those people are here in the United States.  

Hayden was diagnosed with FOP almost 14 years ago.  Since then, the FOP lab at the University of Pennsylvania, has discovered that the ACVR1 gene causes FOP.  Armed with that information, the FOP Lab in conjunction with the International FOP Association, have reached out to pharmaceutical companies to explore the possibility of a cure.

Hayden and his sister Elsa

Today, we are in Phase 2 drug trials with Clementia Pharmaceuticals for a drug called Palovarotine.  The drug is showing much promise.  Hayden is currently enrolled in Clementia's Natural History Study which will help researchers understand the progression of FOP and how an investigational treatment might affect the course of the disease. 

FOP is designated as a rare disease by National Organization for Rare Diseases.  Few rare diseases have a therapy or cure.  Most funds for research for a rare disease come soley from family fundraisers.  The FOP lab at the Department of Orthopaedic Surgery at U of Penn has a budget of $1.5 million/year for research.  75% of these funds come from family fundraising and donations.  25% come from institutional support (NIH/NIAMS, Orthopaedic Research and Education Foundation).  

Hayden and his cousins.

Please support me on my Dipsea run honoring Hayden and FOP research by donating to the International FOP Association.  Click here to make a donation.https://ifopa.salsalabs.org/teamcurefop/p/haydenshope2ndannualdipsearunforfopresearchcurefop

To learn more about the International FOP Association go to www.ifopa.org.