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"His weak hands make it hard for him to
put his socks on and his weak shoulders make it hard to get his
shirt on and off.... he accepts my help. As I watch him
struggle to take off his shirt, I think of his future...will he
ever be able to live independently?"
Friends of FSH Research was
formed
by the family and friends of Brian Colella, who was diagnosed
with Facioscapulahumeral
Dystrophy, or FSHD, in 2004. As an independent, 501(c)(3)
non-profit tax-exempt organization, our goal is to raise money
to help fund
researchers trying to decode the genetic mysteries of FSHD so
that a treatment or cure can be developed.
 Our
organization was created because there is a need for additional
funds for FSHD research. Funding for FSHD research from
organizations that focus on muscular dystrophy and from the National
Institutes of Health has been woefully inadequate. Although millions
of dollars are raised annually for Duchenne muscular dystrophy (DMD)
and amyotrophic lateral sclerosis (ALS, or Lou Gehrig's Disease),
little attention has been paid to FSHD. To stimulate new research
and support for current researchers in this field, it was essential
that a fundraising organization be founded.
We are excited by the opportunity to help those affected by this
disabling condition by funding scientists researching FSHD, and we
feel very lucky to have established a partnership with the
Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research
Center at the University of Washington. Please join us as we
seek a cure to FSHD.
Pacific Northwest Friends of FSH Research depends upon private
donations and grants; we need your
donations and
your support. Please consult with your employer for matching funds;
all donations will be acknowledged for tax purposes. |
