Important Announcement:
Consensus Statement for Standard of Care in Spinal Muscular Atrophy
The International Standard of Care Committee for Spinal Muscular Atrophy was formed in 2005, with a goal of establishing practice guidelines for clinical care of patients with SMA. The 12 core committee members worked with more than 60 spinal muscular atrophy experts in the field to achieve consensus in five key areas of care: diagnostic / new interventions, pulmonary, gastrointestinal / nutrition, orthopedics / rehabilitation, and palliative care.
The consensus statement for Standard of Care in Spinal Muscular Atrophy has now been published in the Journal of Child Neurology.
A complete download PDF version of the statement is available free at
http://jcn.sagepub.com/cgi/reprint/22/8/1027
This is a very important piece of work and the Jennifer Trust very much welcomes its publication. One of our former Trustees and still active member, Marion Main, was a key participant in this work.
We asked Marion about the Consensus Statement. She told us: "My thoughts are that it was great to get every one to work together and come up with this fantastic document."
Marion went on to add a sensible note of caution -"But all people and all children with SMA are very different and you must always look at the person first, no one person is the same and no one document has all the answers". | 
