October 29, 2007:
New Center to Lead
International Muscular Dystrophy Research Effort
(Media-Newswire.com) -
The University of Rochester Medical Center ( URMC )
announced today that it has received a $7.1 million
gift from New York developer and philanthropist
Richard T. Fields for neurological research and
care. The gift – the largest private donation for a
specific disease program in the Medical Center’s
history – will create a research and clinical center
of excellence for facioscapulohumeral dystrophy (
FSHD ), a form of muscular dystrophy.
Read more
AUGUST 18, 2007:
Charity raises money, awareness
Seattle Times staff
columnist, Sherry Grindeland
Call it sole-ful
fundraising. Terry Colella of
Kirkland cleaned her closet and raised money for her
favorite charity — the Friends of FSH Research.
Terry and her husband,
Rich Colella, founded the group in
2004. Their son, Brian, had
received a diagnosis of facioscapulohumeral disease
(FSHD), a nonfatal form of muscular dystrophy that
affects the face, shoulders and arm muscles.
Read more
2007: Determined Family Shines Light on
Little-known Disease
Pacific
Northwest Friends of FSH Research was born of hard work,
vision, and a mother’s unwavering determination.
In 2003, Brian
Colella, an active 16-year-old, was diagnosed with
fascioscapulohumeral muscular dystrophy. FSHD, also known as
Landouzy-Dejerine, is a type of muscular dystrophy that initially
affects muscles of the face, shoulders, and upper arms. Eventually
the degeneration of muscle tissue can spread to the back, legs, and
other areas as well.
After the shock of
his diagnosis, Brian’s mom, Terry Colella, got to work. Terry
discovered that although little was known about FSHD, research into
the disease was woefully underfunded, so there was no cure for Brian
— not even any treatments. Given that reality, Terry and her family
decided to raise money on their own and launched Pacific Northwest
Friends of FSH Research.
Read more
JANUARY 2007: "FiSHing" Auction Breaks
Previous Records
By Brian Colella
On January 27th at
their 3rd Annual FiSHing for a Cure auction, the Pacific Northwest
Friends of FSH Research raised over 191,000 dollars for FSH Muscular
Dystrophy Research. The Kirkland-based nonprofit organization
hosted the event featuring auctioneer John Curley at the Bellevue
Hyatt for the third consecutive year. Thanks to the generosity of
their 290 guests the auction was their most successful yet, raising
a record amount which will fund new research projects at the
University of Washington.
Read more
DECEMBER
2006: Seattle FSHD Workshop
On December 1 &
2, we sponsored a workshop bringing together the brightest minds in
FSHD research to present their latest findings and discuss the best
avenues for future efforts. This unique workshop was co-sponsored
with the Fisher-Shaw Foundation and the
University of Washington's Division of Neurogenetics.
Participants included researchers from across the country as well as
from Europe, and the unique format of this workshop allowed open
exchange of even unpublished and proprietary work and research
techniques.
Read
more
AUGUST 2006: New Research Gift
to the University of Washington
For the second
consecutive year, the success of our
FiSHing for a Cure Auction enabled us to provide a grant to fund
important research into understanding FSHD. Dr. Daniel Miller and
Dr. Stephen Tapscott, two very experienced researchers, won the
grant this year and will receive $100,000 over two years for their
study of FSHD-affected muscle cells.
The Kirkland Courier reported on our research gift on August 10,
2006.
Click here to read the text of the article.
AUGUST 2005: First Research Gift to the
University of Washington
Following a
stunningly successful First Annual
FiSHing for a Cure Auction, we provided our first research gift
to the
University of Washington's Muscular Dystrophy Cooperative Research
Center. After reviewing the submitted research proposals, our
Research Advisory Committee selected Dr. Brian Kennedy and Dr.
Stephen Hauschka to receive a grant of $100,000 over two years to
conduct research into the genetics of FSHD. This is their first-ever
research project related to FSHD.
Our research grant made
news at the University of Washington, and Dr. Paul Ramsey, Dean
of the School of Medicine,
wrote to us about the University's appreciation for our support.
Read more about their research |
