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.
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.
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...
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.