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Pacific Northwest Friends of FSH Research 

Description

Friends of FSH Research is a family founded, all volunteer-run charity whose mission is to stimulate and provide funding for Facioscapulohumeral Muscular Dystrophy research, also known as FSH or FSHD.

FSH is a condition that is progressive and debilitating.  It has received inadequate funding by by other charities and the National Institutes of Health. We believe that those suffering from FSH deserve to have research conducted on their behalf in order to find a treatment or cure. Those with FSH have the right to hope of a better, stronger future.

Mission Statement
Friends of FSH Research, a 501(c)(3) organization, is working to impact the lives of those affected by FSH Muscular Dystrophy by financially supporting FSHD research.

Purpose Statements
1. To encourage, promote and fund increased scientific and clinical research of Facioscapulohumeral Dystrophy, or FSHD.
2. To conduct fund raising efforts and solicit grants and contributions from individuals, private foundations and others, in order to sponsor research to help advance the study and understanding of FSHD, with the goal of identifying a treatment and a cure for the disease.
3. To disseminate information about FSHD and encourage additional public support for FSHD research by raising public awareness of the need for more research funding.
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Pacific Northwest Friends of FSH Research
217 19th Pl 
Kirkland 
WA
98033-4903 
(425) 827-8954 

Teresa Colella RN, MSN 
President 

Programs

Pacific Northwest Friends of FSH Research Programs

1) FSH, a condition which is present at birth and is the most common form of muscular dystrophy affecting more than 35,000 people in the United States. Muscular dystrophy research has lagged behind many other conditions due to lack of past support by the National Institutes of Health. It was only in 2005 that the NIH began providing muscular dystrophy research funding. In 2005, Friends of FSH Research stepped in to stimulate & fund FSH research.

2) Friends of FSH Research conducts a yearly fundraising event in order to raise the money needed to fund promising FSH researchers and their projects. This event helps to increase the public's awareness of this condition and the need for research. Building awareness of FSH is an important part of building support in our community. Awareness is promoted via our website and on Facebook. Education is promoted through the employment of post-doctoral students in FSH research laboratories.

3) Friends of FSH Research supports research workshops in order to support the collaboration of researchers and the sharing of information. We encourage the sharing of information, reagents, specimens, etc. in order to maximize our resources and promote the research successes. Our 4th workshop was held in September 2010.

Recent Successes and Current Challenges

An international collaboration of scientists, including researchers supported by funding from Friends of FSH Research, made an exciting breakthrough in FSH research that was published in Science magazine in August 2010. Due to the role played in this discovery by researchers which received support from Friends of FSH Research, a future treatment for FSH is a true possibility.

To fund research and provide the funding for FSH scholars, our organization needs to raise adequate capital. We need donations - financial as well as items/services that can be auctioned at our yearly charity events. We need people - to help obtain donations as well as to embrace FSH research. We invite our Puget Sound community to join us at our annual dinner/auction as we celebrate the recent discoveries & help fund the research needed for a cure or treatment.

Evaluation

Grant History with The Seattle Foundation:

Grants Awarded through The Seattle Foundation Grantmaking Program:

DateAmountPurpose
There are no recent grants awarded to this organization.

Financials

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