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Connect with Families of SMA:




New England Chapter
President: BJ Mirabile
P.O. Box 2902  Woburn,  MA  01888
P: (508) 476-2174  E: newengland@fsma.org

Visit our online SMA Community by clicking here. First, login or create an account. Then, click the orange "Groups" tab at the top of the page.  Scroll through until you find "New England Chapter" and click "Join Group" to start connecting with other families and friends in your area.

Chapter Events
October 3, 2014   8th Annual Fall Classic FSMA Charity Golf Tournament
August 10, 2014   Lowell Spinners Game & SMA Awareness Day
August 3, 2014   NH Fisher Cat Game & SMA Awareness Day
August 3, 2014   Sea Dogs Game & SMA Awareness Day
June 12, 2014   The 2014 Annual SMA Conference
June 2, 2014   2014 Rogo Cup SMA Golf Tournament
May 17, 2014   14th Annual New England Chapter Cure SMA Walk-n-Roll
April 19, 2014   2nd Annual Cure it with Comedy Show
April 19, 2014   Cure it with Comedy Raffle
April 13, 2014   New England Half Marathon Tour for SMA
Local Chapter News
March 24, 2014   SMA Study Opportunity From The Children's Hospital of Philadelphia
The Children's Hospital of Philadelphia, with generous support of Famillies of SMA, is conducting a study of how parents of children with Spinal Muscular Atrophy (SMA) make decisions about medical care for their children. If you are the parent or legal guardian of a child with SMA, we would like to invite you to participate in this study.
March 19, 2014   Local Author Writes Children’s Book on SMA
Luciante Salce, mother of Dominic, has written a children’s book, “The Adventures of Fizz the Fish.” Fizz, the Chinese fighting fish, has had quite the adventurous life...but there is nothing he loves more than to spend his days with the boy he loves best. Follow this courageous fish on his amazing journeys into the great big world as he learns that the most important experiences are shared with the ones you love. You can order your copy today, and all proceeds will benefit the New England C...

March 9, 2014   2nd Annual Hearts for Ezra Auction and Fundraiser
Join us for the 2nd Annual Hearts For Ezra Auction & Fundraiser. Music by Rick Charette! Magic by Dana Perkins! MC'd by the world famous Jon James of 92 Moose! Fun for all ages! Free Admission!
March 8, 2014   Miles For Matthew St. Paddy’s Day Benefit
Join us on Saturday, March 8, 7-11pm
February 11, 2014   Hearts for Ezra: How this baby boy’s death could change your life
Ezra Bessey was born May 30, 2012, and died a little more than eight months later. In that time, he was loved by his mother, Emily; father, Ethan; and sister, Daisy, now 4, and was largely content with the world. He smiled often and charmed people with his dimples, long eyelashes and big, bright brown eyes. Now, he is having a positive effect on those who never met him.
National News
April 24, 2014   Families of Spinal Muscular Atrophy is Currently Funding 24 Research Projects with Multiple Rounds of New Funding to be Announced in 2014.
Later in 2014 Requests for Proposals (RFPs) with new funding announcements will be made for over $1.5 Million.
April 23, 2014   Phase I Clinical Trial of Systemic SMN Gene Therapy For Spinal Muscular Atrophy To Begin at Nationwide Children’s Hospital in May.
April 23, 2014   New Edition of Compass Newsletter on Spinal Muscular Atrophy Clinical Care Research Grants.


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