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Families of Spinal Muscular Atrophy


Contact Information

Audrey Lewis
925 Busse Rd.
Elk Grove Village, IL 60007

1-800-886-1762 (Voice - Toll-free),
847-367-7620 (Voice),
847-367-7623 (FAX),

Internet Resources


Abstract

Families of Spinal Muscular Atrophy was founded to support families with members suffering from the condition and to promote research into treatments for spinal muscular atrophy (SMA). Spinal muscular atrophy is a group of diseases which affect all age groups, from newborns to adults. The diseases included under spinal muscular atrophy are: Infantile Progressive Spinal Muscular Atrophy (Werdnig-Hoffmann Disease), Juvenile Progressive Spinal Muscular Atrophy (Kugelberg-Welander Disease), and Adult Progressive Spinal Muscular Atrophy (Aran-Duchenne Type).

Publications

Informational packets on Spinal Muscular Atrophy are sent out to anyone who requests a packet. In the packets our Care Series Booklets are included which consist of: Understanding SMA, Genetics of SMA, Breathing Basics, Family Guide to Research, our newsletters called Directions and information on our family support programs, equipment pool and much more. The informational packets are sent free of charge, and can be translated through a CD, if needed.

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Notes

updated contact info, details, MP

Audit

Date Entered: 8/1/1997
Date Edited: 3/9/2013
Date Revised: 9/27/2011
Health Referral Number: HR2292
Accession Number: DP91A0988

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