Did you know?

Some interesting facts about FOP.  Did you know that the earliest documented cases date back to the 17th and 18th centuries?

In 1692, French physician Guy Patin met with a patient who had FOP and mentioned the encounter in his writings. In 1736, British physician John Freke described at length an adolescent whose diagnosis included swellings throughout his back.  The disease became known as

NORD Press Release

National Organization for Rare Diseases
NORD - Press Release
July 21, 2010

WASHINGTON DC-----An advocate for people with rare diseases today told a U.S. Senate committee that the burden of funding and driving research on rare diseases too often falls upon patients and their families.
“As a society, it is wrong for us to expect people with devastating diseases to fund the search for their treatments,” said Diane Dorman, vice president for public policy of the National Organization for Rare Disorders (NORD). “There are nearly 7,000 rare diseases, and only about 200 of them have treatments. Many are not being studied by any researcher in government, academia or industry.
“Through golf tournaments, raffles…"

Congressional Causus on Rare & Neglected Diseases Formed

John Crowley, whose family’s story is portrayed in the feature film Extraordinary Measures starring Harrison Ford and Brendan Fraser, announced at the NORD Gala on May 18 that he and NORD President and CEO Peter L. Saltonstall filed papers that day to pave the way for establishment of a Congressional Caucus on Rare and Neglected Diseases.
The Caucus will provide a forum within the U.S. Congress to focus on issues and legislation related to rare diseases and orphan product development. Crowley and Saltonstall have been working with legislators and legislative aides to lay the groundwork for the Caucus.
To learn more, visit the National Organization of Rare Diseases (NORD) for more information at http://www.rarediseases.org/.

Hayden Turns 10 Years Old

Its hard to believe that a little over 10 years ago Hayden was born.  A few weeks ago we celebrated his 10th birthday.  As I look back to May of 2000, it is hard to believe the road we have traveled. Who would have known then, that our lives would be forever changed by this sweet 7 lb 11oz little boy.  I think we all have ideas in our minds of what our lives will be like once we have children.  Among other things, John and I dreamed about cheering Hayden on at his baseball & soccer games and skiing together as a family.  Even though our lives were sent down a drastically different path because of Hayden's FOP, we are still able to do the things we dreamed about, only a little differently.  At 10, even though his FOP limits him, he is a very happy little boy.  He is surrounded by wonderful friends who are always there for him and include him in every way that they can. So at the end of the day, even though Hayden has FOP, what matters most is that he is happy....and he is very happy.  Happy Birthday to Hayden.  My birthday wish for you is that you are always blessed with such wonderful friends and that you are always happy.

Welcome

Welcome to Hayden's Hope!