Showing posts with label Fund Raising. Show all posts
Showing posts with label Fund Raising. Show all posts

Wednesday, November 21, 2012

What's going on with "Families of SMA"


Advancing Research:
The SMA Drug Pipeline
-We now have 13 new SMA drug programs in development, including 3 clinical trials.
-This pipeline has expanded from just 4 programs 5 years ago.
-Families of SMA has funded half of all the ongoing drug programs for SMA.


Supporting Families:

The FSMA Equipment Pool
-In the last year Families of SMA provided direct services to over 3,600 patients and families.
-We supply critical resources specially designed for SMA patients to live a healthy and comfortable life.
-Recently added medical equipment ranges from adaptive bathing systems to positioning strollers.

 
Giving Hope:
The Annual SMA Conference
-1,500 attendees, 3 times as many families and patients as 5 years ago.
-New specialized programs for newly diagnosed families and for professional care providers.
-Participation has grown to 14 companies, including 3 major pharmaceutical partners.

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1 in 40 people, or 8 million Americans, are genetic carriers.
SMA is the #1 genetic killer of infants.

 Families of SMA --Research, Support, Hope