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      • Carriers of SMA
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      Local, evidenced-based care centers, designed to improve the lives of those with SMA.

      LEARN MORE
    • Local Support

      Cure SMA offers a variety of ways to get involved and connect with your local community.

      Find out more

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      There are nationwide programs available for all families affected by SMA in the US.

      Find out more

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      Contact Us
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      • Overview
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      • Recruit for Clinical Trials
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      Read the latest issue of Compass, Cure SMA’s research publication.

      Learn more
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      Many state and federal policies impact nearly all aspects of life for those affected by SMA.

      Learn more
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      Shop now
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PuckSMA - Patrick and Thommy's 2019 Skate-a-thon

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The Rink / Patrick helping Thommy with developmentally disabled on Halloween
The Rink / Patrick helping Thommy with developmentally disabled on Halloween

We moved into our current home in 2013, and that is when I met Patrick.  He was 16 years old then, and I watched him cruising around the neighborhood in his wheelchair, hanging out with friends, and coming to block parties.  I had no idea what a miracle that was.

Once I got to know Patrick, I learned that he had been born with a general neuromuscular disease called Spinal Muscular Atrophy (SMA). He didn’t say much about it, except that he had been in a wheelchair his entire life and would likely never walk.  I wanted to do something special for Patrick. Of all of my friends, he's the one that helps the most and never complains.  So I decided to do a little poking around, and learned some startling facts about SMA.  

SMA is the leading cause of death in children under the age of two.  And there is no cure.  Think about that for a second.  Children born with the most severe form of this disease, Level I, will likely not live to see their second birthday!  And because it affects only about 1 in 40,000 live births, not much was being done about it.  But championed largely by private fundraising and lobbying efforts, parents of these affected children garnered attention for the disease.  In 2006, SMA was named a translational disease by the National Institute of Health and federal reaching funding was finally increased in support of developing a cure.

In December of 2016, the first FDA approved treatment for SMA was released, giving hope to many affected children by strengthening muscles and prolonging lives.  There remains, however, no cure for this devastating disease.

Won't you join me and Patrick as we take on the fight to finally end this childhood killer?  So much has been accomplished, but there are still more steps to be taken.  Let’s Puck SMA once and for all! 

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Personal Progress:
of Goal
$15,624 Raised
$100,000.00
Fundraising Honor Roll
CharityBuzz
$5,000
Anonymous
$2,500
Fidelity Charitable Gift Fund
$1,000
Thommy O'Brien
$1,000
Jack Privetera
$500
Stuart Sharoff
$500
Robert & Cortney Novogratz
$500
Cash Donations
$354
Conrad Bergstrom
$250
Brent Hayes
$250
Thomas Higgons
$250
Anonymous
$200
Fran Paladino & Family
$200
Susan Conover
$150
Carrie Sumas
$150
Joseph DeLaurentis
$150
James O'Brien
$100
Keith Goldberg
$100
Ricardo Ayala
$100
Jennifer Calder
$100
Rick Sacchetti
$100
Erin Lovering
$100
Thommy O'Brien
$100
Jim Vreeland
$100
Brigid Robertshaw
$100
Gary Wiedman
$100
KJ Guinan
$100
Danielle Bloom
$100
Mik Momen
$100
Kathleen Genyk
$100
Mike Niarchos
$100
Amy Kaufman
$100
Cynthia Mathis
$100
Mark Kelly
$100
Benjamin Chuckrow
$100
daniel bonoff
$100
Beth Hornstein
$100
Kevin Morrissey
Jennifer Gilman
$50
Christine and Greg Boozer
$50
Claudia Dolphin
Mary Eileen Janet O'Brien
April Myers Heffernan
$50
Diane Skrnich
$50
Jean Totino
$30
Diana Berthelon
$25
michelle difilippo
$25
Jeannine Haden
$25
Jacqueline Sanchez
Debi Demcsak
$25
Debbie Puia
$20
Jacqui Lenner
Anonymous
$5

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