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Our team in the Spinal Muscular Atrophy Program at Boston Children’s Hospital will talk with you about your child’s condition, discuss any questions you have, and try to help you find the support you need. The following resources may also be helpful to you.
The Spinal Muscular Atrophy Program at Boston Children’s writes a periodic newsletter for families in the clinic. You can also find current and past issues here. The newsletter covers new developments in our clinic as well as news from the broader SMA community.
Please note that neither Boston Children’s Hospital nor the Spinal Muscular Atrophy Program at Boston Children’s unreservedly endorses all of the information found at the sites listed below.
Our SMA Program is part of the Pediatric Neuromuscular Clinical Research (PNCR) Network. The group’s website offers a variety of information including educational materials on how clinical trials work.
A consensus statement on the standard of care in spinal muscular atrophy was published in August 2007 in the Journal of Child Neurology. That document is summarized in a family guide, available in English or Spanish.
The SMA Foundation promotes research and raises awareness about SMA. Their website offers educational materials and features news from the SMA community.
Families of SMA supports families, funds research, and hosts an annual conference. Their website also provides information from local chapters.
The Muscular Dystrophy Association funds research and provides support services for families affected by muscular dystrophy as well as other neuromuscular diseases including SMA.
You can register your child with the International Spinal Muscular Atrophy Patient Registry, which helps to connect families affected by SMA with researchers. The registry is hosted by Indiana University.
The Boston Children’s For Patients and Families website offers information on the wide array of support services available to families at Boston Children’s.
With the free Boston Children’s Carepages service, you can set up a unique web page for your child. Carepages makes it easy to stay in touch with family and friends when your child is undergoing treatment.
Each year, the Boston Children’s Neurology department hosts a Boston SMA Day. This one-day conference brings together researchers and families to share the most up-to-date information on spinal muscular atrophy.
Everybody is welcome, including children, for whom special events and supervision will be offered. The 2013 date has been scheduled for Saturday, April 6th.
The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”