Spinal Muscular Atrophy

The SMA TreatmentAcceleration Act

Joshua Joel FLetcher

Joshua is now 11 months and has spent has spent 5 months at Shands Hospital in the Pediatric Intensive Care Unit. He is home, on 24hr ventilation, has a Trach, G-tube and has lost all his movements except his left index finger. However, even with the above surgical procedures much is still lacking to assist him with his daily life functions.

Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.

Specifically, “The SMA Treatment Acceleration Act” provides for the following:

• Federal support for a national clinical trials network for SMA;• Federal support to enhance the existing SMA patient registry

and for expanded research on the epidemiology of SMA;• Establishes an SMA Coordinating Committee to include

federal agencies, SMA researchers, and SMA families, which shall study barriers to development of SMA treatments;

• Establishes a trans-Institute research collaboration at NIH under the Director to ensure that all relevant Institutes are contributing and collaborating on SMA research;

• Requires the Secretary of the U.S. Department of Health and Human Services (HHS) to study and report to Congress on the use of incentives to promote SMA drug development among private industry;

• Provides for the Secretary of HHS to establish a program to provide information and education on SMA to health professionals and the general public

• PetitionToCureSMA.com is a grassroots effort started by Bill and Victoria Strong in support of the SMA Treatement Acceleration Act, which was initially introduced in 2007 and was reintroduced in 2009 in the current session of the United States Congress. • The passage of this legislation will help END

SMA, the #1 genetic killer of young children, and provide groundbreaking data for SMA and other disorders, including the muscular dystrophies, ALS/Lou Gehrig's disease, Friedriech's Ataxia, Fragile X syndrome, and Huntington's disease among others.

Currently there is no cure for SMA, just clinical studies and non in Florida.  Studies are available in Utah, Philadelphia, Virginia, California, New Jersey, Maryland, Texas and other cities; however Joshua is unable to travel to these States due to his diagnosis. It is hoped that with the help of Congress the door will be opened for funding to other States, and all research will be governed under the FDA. Please help us promote SMA

awareness by going to PetitionToCureSMA.com and

sign the petition.

Joshua Today