October 19, 2009: Grant Opportunity for Facioscapulohumeral Muscular Dystrophy Research

Friends of FSH Research, in cooperation with the Muscular Dystrophy Association, is pleased to announce a new grant opportunity:

Therapeutic Targets for Facioscapulohumeral Muscular Dystrophy

Your generous funding has enabled Friends of FSH Research to collaborate with the MDA in providing a two year grant opportunity. Proposals are being invited, under a competitive Request for Applications (RFA) process, to award a grant focusing on the identification, prioritization, and/or validation of molecular targets for potential therapies or cures for Facioscapulohumeral Muscular Dystrophy.

We anticipate funding one award for two years under this program. The award is limited to $100,000 per year for two years, for a total award of $200,000.

Please see the attached RFA for details, and share with your colleagues who may be interested.

February 7, 2009: One Million Dollars for FSH Muscular Dystrophy Research

Bellevue, Washington – With the support of sponsors and guests, the 5th annual “Fishing for a Cure” auction cleared more than $200,000 and enabled this home based, grass roots organization to claim a million dollars raised for FSH Muscular Dystrophy research.

Pacific Northwest Friends of FSH Research, based in Kirkland, Washington is extremely grateful to their many supporters over the past 5 years who made this million dollar landmark possible. Read more

October 10, 2008: Helping the fight against muscular dystrophy

Bedford, Mass. -- Daniel Perez has been fighting muscular dystrophy his entire life and has been fighting for something else – national funds and attention for a form of muscular dystrophy.

Recently, his efforts paid off.

The US National Institutes of Health (NIH) has awarded $9 million to launch a unique collaboration of researchers, clinicians, patients, government research agencies and pharmaceutical/biomedical companies to study the causes and potential treatments for facioscapulohumeral muscular dystrophy (FSHD), a muscle weakening disabling disease. The award will create the first Senator Wellstone Muscular Dystrophy Cooperative Research Center (MD CRC) to focus on FSHD. Read more

JUNE 18, 2008: Can your Help Move Muscles? Yes!

Thunder Bay, ON — Moving Muscles Ride 2008, a group of five university students, are cycling across Canada this summer to raise funds and awareness for Muscular Dystrophy and will be arriving in Thunder Bay from the west on Wednesday June 18th. Read more

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, Rick 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 facioscapulohumeral 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 FisherShaw 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