Spinal Muscular Atrophy Program Patient Resources

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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.

From our team

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.

Summer 2013

Spring 2012 

March 2011

August 2009

February 2009

February 2008

August 2007

February 2007

August 2006

Resources outside of Boston Children's

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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.

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Support throughout Boston Children's

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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.

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Events

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Boston SMA Day

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.

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Request an Appointment

If this is a medical emergency, please dial 9-1-1. This form should not be used in an emergency.

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Send RequestIf you do not see the specialty you are looking for, please call us at: 617-355-6000.International visitors should call International Health Services at +1-617-355-5209.
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This department is currently not accepting appointment requests online. Please call us at: 617-355-6000. International +1-617-355-6000.

This department is currently not accepting appointment requests online. Please call us at: 617-355-6000. International +1-617-355-6000.

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If you have questions or would like more information, please call:

617-355-6000 +1-617-355-6000
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Contact the Spinal Muscular Atrophy Program

  • 617-355-8235
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.”
- Sandra L. Fenwick, President and CEO
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