Pediatric SMA Clinic

Director:
Dr. Darryl C. De Vivo

Associate Director:
Dr. Petra Kaufmann

Columbia University, Division of Pediatric Neurology (Director: Dr. Marc C. Patterson)

Location:

Harkness Pavilion, Suite 542

180 Fort Washington Avenue

New York NY 10032-3791

Program Coordinator:

Ms. Leslie Disla

Phone:212-305-6038

Fax: 212-305-1253

Email:

Team

Neurology

Attendings:
Darryl De Vivo MD
Petra Kaufmann MD
Juan Pascual MD PhD

Pediatric Neuromuscular Fellow
Romana Kulikova-Schupak MD
& Pediatric Neurology Fellows

Rehabilitation Medicine
Nancy Strauss MD
& Physiatry Residents

Genetics
Wendy Chung MD
Carrie Koval MS

Pulmonology
Anastassios Koumbourlis MD

Orthopedic Surgery
David Roy MD
Joshua Hyman MD
Michael Vitale MD

Neuropsychology
Veronica Hinton PhD

Brace Specialist
…

Services, Education, Care

  • Diagnostic Consultation
  • Genetic Counselling
  • Multidisciplinary Follow-up Care
  • Support Group Information
  • Educational Material
  • Referral Service for powered or manual wheelchair
  • Evaluation for braces

Making an Appointment

  • Monday thru Friday 9-5
  • Appointments call 212-342-0263
  • Email inquiries should be directed to
  • The offices are located in the Division of Pediatric Neurology, Harkness Pavillion 5th floor, Fort Washington Avenue. The building is wheelchair accessible.
  • Wheelchairs are located at all entrances of the Medical Center (if there is a problem obtaining one, please have a security office call the center at 2-0263 to provide more assistance)

Maps of the Medical Center can be accessed at

Lodging Locations can be accessed at

Parking Specifics can be accessed at

International patients should contact International Services at
212-746-4455 or

Mission

The Pediatric SMA Clinic is committed to providing comprehensive patient care, supporting research into the cause and cure for spinal muscular atrophy, educating tomorrow’s health care professionals, and reaching out to the community we serve

SMA Evaluation and Treatment

At the Pediatric SMA Clinic, a neurologist with expertise in SMA and pediatric neuromuscular disease conducts the SMA evaluation. The first step in being evaluated is to be seen by one of the attending physicians or fellows at the clinic. A thorough neurological examination will be conducted and previous tests reviewed. If indicated, additional diagnostic examinations (tests) may be recommended.
The additional diagnostic examinations may include some blood tests. The neurologist may also refer you to genetic counseling and genetic testing from a blood sample. Sometimes, an EMG study is suggested to further evaluate your child’s condition. The test has two parts: The first part, called nerve conduction study, measures how the nerves conduct impulses. Small, harmless electric stimulation is applied and the effects on the nerves are measured. The second part, called electromyography, uses a very small needle which is inserted superficially into the muscles, to evaluate muscle activity. This test involves minimal discomfort, but is safe and does not cause lasting discomfort or problems.
You will be asked to return to the Clinic after all of your testing is complete to meet again with the neurologist for a diagnostic discussion. If the diagnosis is confirmed, you will then meet with the multidisciplinary team members who will provide evaluation and specific recommendations for how to approach the changes your child is experiencing.
It is very important that children and their families maintain regular contact with an SMA. For affected children and their family quality of life is linked to the care they receive.

Effective symptom management will help maintain and enhance quality of life. This includes regular assessment of physical functioning in order to provide education and guidance concerning the maintenance of strength, balance, and safety. Additionally, nutritional intake should be assessed regularly and adjustments made according to changes in physical status. Respiratory function should also be monitored on a regular basis. This will allow the pulmonologist on our team to recommend special respiratory treatments in a timely fashion. Similarly, we recommend that any possible spine curvature be monitored during the clinic visits and perhaps evaluated with an X-ray if needed. This will help the orthopedist on our team to make recommendations on proactive management of spine problems. Periodic sessions with the Rehabilitation Medicine Specialist will make sure that you have adequate adaptive and augmentative equipment to maintain mobility, and safety.
It is also extremely important that families become educated in order to actively participate in their child’s medical care. We are therefore teaming up with voluntary patient organizations and can provide information on publications, websites and support groups. Attending the clinic on a regular basis is an effective way to remain abreast of new medical developments as you meet with our physicians.
The SMA clinic offers expertise, education, resources, and guidance to families affected by SMA.

We aim to facilitate access to state of the art comprehensive care by working with a network of specialists with expertise in pediatric neuromuscular disease.

This will allow patients and their families to minimize trips to medical appointments.

We will create a plan of care in a compassionate, child friendly environment with the goal of maintaining the highest level of independence and function possible.

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