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Community and Internet Resources


Health and Care:

Disability Specific Resources: Spinal Muscular Atrophy

New Horizons Un-limited is not endorsing and assumes no responsibility in guaranteeing the products, services, programs or conditions as described. If you are interested in a resource listed below, call or contact the resource to verify the current situation. Evaluate the information, analyze your unique circumstances, use your best judgement and make your own decisions when using the information. Before making any change, consult your health care professional.

International
National
State Listings:   MA / NY / OH    (Official USPS State Abbreviations)


International

International Spinal Muscular Atrophy Patient Registry (the Registry) is a bridge connecting Spinal Muscular Atrophy (SMA) patients and families with researchers who are investigating SMA. The Registry is housed at Indiana University School of Medicine in the Department of Medical and Molecular Genetics. Individuals and families with SMA join the Registry and provide information on various aspects of SMA such as symptoms, age of onset, and treatment. SMA researchers can then use the Registry as a data/information resource and for recruitment of participants for research studies and clinical trials. Making this connection between families and researchers is an important step in SMA research. Information in their website is provided for both potential participants and potential researchers. If you have any questions about the Registry, please feel free to contact the Registry staff.


National

New Sign SMA Medical Supply is a company started by a mother of a child with SMA whose goal is to serve the needs of SMA families as well as others afflicted by many different types of diseases and conditions. Understanding that long wait times for life-sustaining equipment, an unwillingness to replace broken devices, and failure to stock backup equipment were commonplace with medical equipment providers, she created SMA Medical Supply to help fill the gap. You can contact SMA Medical Supply by Mail: S.M.A. Medical Supply, 11691 Hill Country Circle Ponder, TX 76259, Phone: 269-274-1414, Fax: 773-409-9232, Email: info@smasupply.com, or by sending a note on their Contact Form.

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State Listings


Massachussetts

Spinal Muscular Atrophy Program at Boston Children's Hospital brings together a comprehensive team of specialists who are experienced in caring for children with SMA. hold a dedicated SMA clinic once a month so that your child can receive all of his or her SMA-related care in a single visit. This multi-disciplinary approach means that our various specialists work closely with each other and with your family so that your child’s care is well coordinated. Physicians and researchers at Boston Children’s Hospital 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. For more information contact the Spinal Muscular Atrophy Program call 617-355-8235 or Boston Children’s Hospital 300 Longwood Avenue Fegan 11 Boston, MA 02115 Phone: 857-218-4677 Fax: 617-730-0279


New York

Columbia University Department of Neurology Spinal Muscular Atrophy Clinical Research Center at the Pediatric SMA Clinical Research Center, a neurologist with expertise in SMA and pediatric neuromuscular disease conducts the SMA evaluation. The first step in being evaluated is to be examined by their team of physicians at the clinic. A thorough neurological examination will be conducted and previous tests reviewed. If indicated, additional diagnostic examinations (tests) may be recommended. The Pediatric SMA Clinical Research Center, which operates conjointly with the Pediatric Neuromuscular Clinic at Columbia University, is organized according to a team model. The clinic offers special expertise in SMA and other neuromuscular disorders, and provides access to highly skilled neurologists, pulmonologists, cardiologists, physiatrists, orthopedists, psychologists, nurse practitioners, and therapists who work collaboratively to deliver the utmost compassionate, high quality care to each of the patients. Clinical care at the clinic mirrors the published Standard of Care guidelines for Spinal Muscular Atrophy, Duchenne Muscular Dystrophy and related neuromuscular disorders. SMA Clinic has been established, with the generous support of the SMA Foundation. There are several research projects that are open for enrollment. Visit the website to find contact information for each project.


Ohio

New Sign Nationwide Children's Spinal Muscular Atrophy Clinic is a joint program between Nationwide Children’s Hospital and The Ohio State University Wexner Medical Center, providing comprehensive, multidisciplinary care for patients from across the United States. They assist patients and families cope with the chronic effects of SMA. They care for infants, children and adults. The Spinal Muscular Atrophy (SMA) Clinic accepts referrals from primary care physicians and pediatric specialists from the United States and internationally. To make a referral, there are three options: Request a Spinal Muscular Atrophy (SMA) clinic appointment (option under "Neuromuscular Disorders"), Fax a referral request to (614) 722-4000, or Make a referral and schedule by phone, call (614) 722-6200 or (877) 722-6220. They are involved in research in the The NeuroNEXT SMA Biomarker Study, Clinical Research and Translational Research. For more information visit their website or contact them at the Nationwide Children's Hospital,
700 Children's Drive Columbus, Ohio 43205 or call 614-722-2000

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[Updated May 31, 2017]
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