Spinal Muscular Atrophy (SMA) Program

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Contact the Spinal Muscular Atrophy Program

  • 1-617-355-8235
  • International: +1-617-355-5209

Children with spinal muscular atrophy (SMA) need care from experts in several medical fields. The Spinal Muscular Atrophy Program at Boston Children’s Hospital brings together a team of specialists who are experienced in caring for children with this rare and complex condition.

Our expertise

Our Spinal Muscular Atrophy Program at Boston Children’s Hospital is devoted to providing comprehensive care for children with spinal muscular atrophy (SMA). The program, directed by Basil Darras, MD, brings together specialists from a variety of fields including:

  • neurology
  • genetics
  • orthopedics
  • physical therapy
  • respiratory/pulmonary
  • nutrition
  • gastroenterology
  • anesthesiology
  • surgery 
  • social work

Our SMA Program at Boston Children’s is supported by the Spinal Muscular Atrophy Foundation.

A dedicated SMA clinic

We hold a dedicated SMA clinic once a month. The clinic allows you to meet with all of your child’s SMA-related providers during a single visit. It also gives us the opportunity to evaluate your child’s health as a whole, and to work with your family to make the best treatment decisions.

During clinic, our core team of physicians, specialists and therapists sees patients together. When you come for an appointment during this clinic, your child will see several kinds of specialists:

  • neurology
  • genetics
  • orthopedics
  • physical therapy
  • nutrition/gastroenterology
  • respiratory/pulmonary

Our clinic also gives you the chance to meet other families affected by SMA and to learn about research opportunities.

Home respiratory support

The Critical Care, Anesthesia Perioperative Extension (CAPE) and Home Ventilation Program provides comprehensive services to help families plan for their child’s discharge from the hospital and manage respiratory care at home. The program also evaluates home respiratory equipment and is available 24 hours a day for consultation and support.

Experienced specialists

Our clinical teams are experienced in caring for children with SMA. For example, children with SMA can have complications when having anesthesia because of weakness in the respiratory muscles. Our team of anesthesiologists understands SMA and has the expertise to safely provide anesthesia for our SMA patients.

For families whose children are facing an especially difficult prognosis, we put them in touch with the Pediatric Advanced Care Team at Boston Children’s. This group can provide comfort and support for you and your child as you make choices about treatment.

Physicians and researchers at Boston Children’s make clinical innovation and research on SMA a priority. We work every day to improve the care we provide to our patients and their families.

State-of-the-art diagnostics

We use a number of different tests to help us accurately diagnose your child and evaluate his or her condition. Our program takes advantage of several superb clinical and laboratory resources at Boston Children’s, including:

Innovation and research

Physicians and researchers at Boston Children’s make clinical innovation and research on SMA a priority. We work every day to improve the care we provide to our patients and their families.

Learn about the latest research and innovations at Boston Children’s.

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
For Patients: 617-355-6000 | 800-355-7944

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