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In
February of 2001, Joe and Mary McHale took their gurgling, smiling, six
month old son Danny in for a checkup. After ten minutes with the
physician, they were informed that their happy little boy had a
neuromuscular condition called Spinal Muscular Atrophy, and it was
terminal. When Joe and Mary asked what could be done for little Danny,
the physician said: “Nothing. Take him home and love him in the time
you have left.” He wasn’t expected to see his first birthday. Unwilling
to accept this prognosis, the McHales called “Families of
SMA” that afternoon. They were told: “Yes, there is hope.”
Soon
after, Connie Book, a member of the McHale’s church,
learned of Danny’s diagnosis. Although she had met the
McHales only once, she really wanted to do something to help.
She offered to host an evening of music and put together a
few auction items. She invited friends and neighbors to join
in. That night, back in June of 2001, more than 50 people
came together in the Book’s backyard. They raised $7,500
for FSMA to help further the research and development of a
treatment.
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 That little event
turned into a second event. In July of 2002, Michelle and
Nick Nicholas offered to host. Over 100 people came together
and raised an amazing $18,000. That night, Mary and Don Wheeler
came to support Danny. Weeks later they learned that the toddler
daughter of their closest friends, Andris and Nancy Dindzans,
was just diagnosed with SMA. The Wheelers introduced the Dindzans
to Joe and Mary. After a few tearful meetings, Nancy and her
family joined the fight.
In 2003 the event
outgrew back yards. “Concert for a Cure” was officially
born! Now, with a caring and talented crew of volunteers,
the “Concert for a Cure” event has turned into
an annual event. In 2003 the event raised over $42,000, all
going to find a cure! As word spread of the special evening,
2004’s event was destined for success. Over 230 people attended and the event raised over $63,000.
Through
“Concert for a Cure” announcements and local publicity,
Gene and Marilyn Andrade, whose granddaughter Isabella had
been recently diagnosed, learned of the event and joined forces
in 2004. The McHales have realized there are many families
in the SF Bay Area whose lives have been affected by this
disease. The annual “Concert for a Cure” events
are marked by a sense of magic, support and hope to make a
cure a reality for Danny, Ariana, Isabella, and all of the children in the world
afflicted with SMA.
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It
has been an amazing eleven years since the McHales were told
of Danny’s diagnosis. Danny is now 11 1/2 and loving
life in middle school. FSMA,
a volunteer driven organization, has worked tirelessly to
bring researchers and physicians together to find a cure.
Danny has participated in two clinical drug trials funded
by FSMA, and is currently performing tasks he was never expected
to do. Ariana has participated in one of the drug trials and is also
showing signs of improvement. FSMA, with your help, is well
on their way to developing a drug treatment which will lead
to a cure.
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We appreciate
your support in the search for this cure!
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