Fight For Ryan, Help Cure SMA
- by: Chris & Jenn Hawn
- recipient: United States Senate and United States House of Representatives
This petition is 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.
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Our son, Ryan, was diagnosed with SMA type 1 on May 27th, 2009 on his 4 month birthday. Each day that we have with Ryan is a gift as his life on earth will be shortened by this disease. Please help us Fight For Ryan and for other families and children with SMA. Your support is so important to help find a cure.
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About SMA
About SMA Research
Although SMA is a relatively unknown common rare disease, scientific research and understanding of the disease is extremely mature and active. Dramatic breakthroughs have been made in the past fifteen years and, as a result of those breakthroughs, SMA has quickly gone from a poorly understood disease to being on the doorstep of a viable treatment.
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The SMA Treatment Acceleration Act will:
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Other Ways You Can Help PetitionToCureSMA.com:
Sincerely,
Christopher & Jennifer Hawn
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Our son, Ryan, was diagnosed with SMA type 1 on May 27th, 2009 on his 4 month birthday. Each day that we have with Ryan is a gift as his life on earth will be shortened by this disease. Please help us Fight For Ryan and for other families and children with SMA. Your support is so important to help find a cure.
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About SMA
- SMA is the #1 genetic killer of young children.
- Fewer than 1 in 35 people unknowingly carrying the gene responsible for SMA.
- 1 in every 6,000 babies is born with SMA; SMA prevalence is comparable to ALS and Cystic Fibrosis.
- SMA impacts the ability to walk, sit, stand, eat, breathe, and swallow. SMA does not impact the mind and children with SMA are bright and social.
- There is currently no treatment and no cure for SMA, but there is HOPE!
- The NIH has selected SMA as the disease closest to treatment of more than 600 disorders.
- Leading U.S. researchers, including Nobel laureate James Watson, have stated that a viable treatment for SMA is possible within 5 years IF they are provided the proper resources.
About SMA Research
Although SMA is a relatively unknown common rare disease, scientific research and understanding of the disease is extremely mature and active. Dramatic breakthroughs have been made in the past fifteen years and, as a result of those breakthroughs, SMA has quickly gone from a poorly understood disease to being on the doorstep of a viable treatment.
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The SMA Treatment Acceleration Act will:
- Provide Federal support for a national clinical trials network for SMA.
- Provide Federal support to enhance the SMA patient registry and for expanded research on the epidemiology of SMA.
- Establish an Interagency SMA Research Coordinating Committee to include federal agencies including NIH, SMA researchers, and SMA families, to coordinate government activities relating to SMA, develop a comprehensive strategy for improving and expanding SMA research, make recommendations to strengthen collaborative research across multiple institutes at NIH, and identify barriers to the development of drugs for treating SMA.
- Provide for the Secretary of HHS to establish a program to provide information and education on SMA to health professionals and the general public.
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Other Ways You Can Help PetitionToCureSMA.com:
- Household Check. Make sure that your spouse or others in your household have all signed the petition. Every signature is important.
- Email. Email the petition link - http://PetitionToCureSMA.com - to every contact you know and ask that they do the same.
- Facebook Status. Use your Facebook status to urge your "friends" to sign the petition and pass it on.
- Post a link on your blog and ask blogs that you follow to do the same.
Sincerely,
Christopher & Jennifer Hawn
We the undersigned, as [people/family members of a person/friends of a person] with Spinal Muscular Atrophy (SMA), are writing to urge you to research and support S. 1158 and HR. 2149, the SMA Treatment Acceleration Act.
SMA is the number one genetic killer of young children, occurring in about 1 of every 6,000 births. It is estimated that 1 in every 35 people, or nearly 10 million Americans, unknowingly carries the gene that causes SMA. There is no known treatment for this degenerative, nerve destructive disease, but great research advances have been made, thanks to the efforts of passionate families and voluntary health organizations that serve the SMA community. In fact, among more than 600 neurological disorders, SMA has been singled out by the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) as the disease closest to treatment based on scientists advanced genetic understanding of the disease.
In order to support the scientific and clinical community working to find a cure for SMA, the SMA community has united to introduce the SMA Treatment Acceleration Act. Passage of this landmark legislation will enable scientists to mount national clinical trials that will lead to treatments and/or cures for people inflicted with this horrible disease. Further, as researchers make progress unlocking a cure for SMA, their work is also making strides toward understanding and possibly curing a number of other conditions including ALS/Lou Gehrig's, Parkinson's, Alzheimer's, and many more.
Again, please consider researching and supporting the SMA Treatment Acceleration Act, S. 1158/HR. 2149 and thank you for taking the time to read this letter.
Sign PetitionSign PetitionSMA is the number one genetic killer of young children, occurring in about 1 of every 6,000 births. It is estimated that 1 in every 35 people, or nearly 10 million Americans, unknowingly carries the gene that causes SMA. There is no known treatment for this degenerative, nerve destructive disease, but great research advances have been made, thanks to the efforts of passionate families and voluntary health organizations that serve the SMA community. In fact, among more than 600 neurological disorders, SMA has been singled out by the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) as the disease closest to treatment based on scientists advanced genetic understanding of the disease.
In order to support the scientific and clinical community working to find a cure for SMA, the SMA community has united to introduce the SMA Treatment Acceleration Act. Passage of this landmark legislation will enable scientists to mount national clinical trials that will lead to treatments and/or cures for people inflicted with this horrible disease. Further, as researchers make progress unlocking a cure for SMA, their work is also making strides toward understanding and possibly curing a number of other conditions including ALS/Lou Gehrig's, Parkinson's, Alzheimer's, and many more.
Again, please consider researching and supporting the SMA Treatment Acceleration Act, S. 1158/HR. 2149 and thank you for taking the time to read this letter.
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