Pfizer & Repligen Collaborate on SMA Therapy
Families of Spinal Muscular Atrophy Committed $2.5 Million to Funding SMA Research in 2012
Families of SMA is dedicated to creating a treatment and cure for Spinal Muscular Atrophy by funding and advancing a comprehensive research program, which includes:
-Basic Research to reveal the best ways of making SMA drugs,
-Drug Discovery to make practical new drugs, and
-Clinical Trial resources to help test new drugs. Families of SMA committed new funding to the following research during 2012:
-$710,000 for Basic Research.
-$1,450,000 for Drug Discovery.
-$110,000 for Clinical Trial Resources.
-$200,000 for the 16th SMA Research Group Meeting.
Research funding was provided to the following institutions: Northwestern University; Johns Hopkins University School of Medicine; University of Southern California; University of Ottawa; Indiana University; Nationwide Children's Hospital; CALIBR; The SMA Patient Registry; Ohio State University. Click here to see the details of the awards. The 2013 Annual Campaign has now raised over $400,000 for SMA research and support.
80% towards our initial goal of half a million!
There's a NEW Facebook group for SMA Support
if you are affected by SMA in ANY way,;whether a family member, therapist, doctor, etc... YOU ARE WELCOME TO JOIN!
The more minds we put together, the better!
August is SMA AWARENESS MONTH
FSMA has started doing the 2nd Saturday of August as candle light night. So just wherever you are you can light a candle in memory of and honor of all those with SMA. You can get groups together too if you want. Some people have events for this
EVERYONE, help Madison Reed win a chance to meet boy band "Big Time Rush!" Madison is 15 years old living with Type 1, SMA...let's help her WIN THIS! All you
The NEW cough assist machine is here!
The new, smaller cough assist machine is finally here by Philips Respironics. Check it out:
Remember the "E70" is the overseas version..
if you are in the United States you need to request a prescription from you doctor
for the version called "T 70"
Click below to check and make sure your Trilogy Vent is not one that has a recall.
Remember the Candle lighting on the 2nd Saturday - August 11th, at sunset.
Phase 2 ISIS Study enrollment