News & Publications

Research & Reports from Professionals

1. Call in the backup – An Review on the current state of SMA trerapeutics

Written by Elie Dolgin. Published in Nature Medicine (Vol18, November 2012)

2. ISIS Initiates Phase 1 Clinical Study Of ISIS-SMNrx In Patients With Spinal Muscular Atrophy

Press release from ISIS Pharmaceuticals in 2011

3. Report on the FSMA (USA) Annual Family & Professionals Conference 2011

Written by Dr. William Yip, our Medical Advisor in 2011

4. Carrier Incidence for spinal muscular atrophy in southern Chinese

Written by Prof. Vivian Chan et al. From Department of Medicine, University of Hong Kong in 2004

Publication on Proper Health Management for SMA Patients

1. Standards of Care for Spinal Muscular Atrophy

This provides information for Families about how to take care of patients with SMA.     Recommended!

2.Nutrition Basics

Discussion of Fostering Health and Growth for Spinal Muscular Atrophy

3. Caring Choices

Booklet for Families of Infants Newly Diagnosed with SMA Type I

4. Breathing Basics

Discussion of Respiratory Care for Children with Spinal Muscular Atrophy

5. Empowering Families of SMA--Navigating your Child's Course of Therapy for Best Outcomes

Discussion of Role PT, OT, Speech and Family.

6. The Family Guide to the Consensus Statement for Standard of Care in SMA*

This provides information for parents about how to take care of patients with SMA.

7. A Guide Of Common Passive Stretching Exercises

This introduces some passive exercises that can slow down the muscle deterioration in patients.

8. A Guide Of Active Exercises

This introduces some active exercises that can slow down the muscle deterioration in patients.

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