In the current issue of Quest magazine, our friends at MDA discuss a recent multi-center study that suggests spinal muscular atrophy (SMA) patients who are unable to walk but are otherwise considered to have “relatively high motor function” are at a higher risk for weight gain. This is when compared to SMA patient who do walk and to SMA patients who do not walk but have a lower level of motor function. The results seem to reinforce the importance of managing nutrition in the care of SMA patients.
To read the entire article in Quest, click here. To read the abstract of the study, click here.
For more information about SMA and nutrition, check out the links below.
- “Spinal Muscular Atrophy GI and Nutrition Care” on FightSMA’s website
- “Investigating the Impact of Nutrition on SMA” from the FightSMA’s blog
- A Family Guide to the Consensus Statement for Standard of Care in Spinal Muscular Atrophy
Published by The Patient Advisory Group of the International Coordinating Committee (ICC) for SMA Clinical Trials - Consensus Statement for Standard of Care in Spinal Muscular Atrophy
Prepared by the Standard of Care Committee for Spinal Muscular Atrophy, a standing committee of the International Coordinating Committee for Spinal Muscular Atrophy
Two of the panelists were Dr. Alan Guttmacher and Mr. John F. Crowley.
Mr. Crowley, CEO and Chairman of Amicus Therapeutics, spoke about patient advocacy, and the admirable work and advocacy that 
Congratulations to long-time friend and 
