PLEASE SIGN THIS PETITION TO HELP CURE SPINAL
MUSCULAR ATROPHY (SMA), THE #1 GENETIC KILLER OF CHILDREN UNDER THE AGE OF 2.
We need your help to move landmark legislation through Congress that will
allocate federal resources to non-profit and research organizations focused on
finding a treatment and/or cure for SMA.
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Our precious daughter, Gwendolyn (http://www.GwendolynStrong.com),
was born perfectly healthy in October 2007 and diagnosed with SMA at the age of
6 months. SMA is a degenerative disease that destroys the nerves controlling
voluntary muscle movement including crawling, walking, breathing, head and neck
control, and even swallowing. Gwendolyn has Type 1 SMA, which is the most
aggressive form of the disease. Gwendolyn's mind, heart, and spirit are no
different from that of any other healthy baby, but her body is failing her. We
will most likely lose our little girl to this disease before she reaches the age
of 2 as there is currently no treatment and no cure, but there is HOPE.
Gwendolyn is one of thousands of children coping with this devastating disease.
In fact, 600 new babies will be born in the United States with SMA this year
alone. The good news is HOPE is on the horizon. The National Institute of
Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS)
have selected SMA as the disease closest to treatment of more than 600
neurological disorders and researchers estimate that we are as close as only a
few years away from finding a treatment and/or cure for SMA. However, funding
and organization is needed to allow researchers to make that last critical step.
THAT'S WHERE WE NEED YOUR HELP!!!
For the first time, legislation has been proposed in the United States Congress
to allocate federal resources to non-profit and research organizations focused
solely on finding a treatment and/or cure for SMA. The SMA Treatment
Acceleration Act (H.R. 3334/S. 2042) was introduced in the House of
Representatives as H.R. 3334 by Rep. Patrick Kennedy (D-RI) and Rep. Eric Cantor
(R-VA) and in the Senate as S. 2042 by Sen. Debbie Stabenow (D-MI) and Sen.
Johnny Isakson (R-GA) in August 2007 and September 2007, respectively. This
legislation is supported by Families of SMA, the SMA Foundation, Fight SMA, and
the Muscular Dystrophy Association. The passage of this legislation could change
the lives of thousands of children and give them the future they so deserve.
The SMA Treatment Acceleration Act specifically authorizes federal funding in
order to:
- Upgrade and unify existing SMA clinical trials sites and establish a national clinical trials network for SMA.
- Establish a Data Coordinating Center to provide expert assistance and advice to SMA clinical trials sites.
- Expand and intensify federally supported research programs with respect to pre-clinical translational research related to SMA.
- Establish a research collaborative at the National Institutes of Health to ensure cooperation across multiple institutes regarding research related to SMA.
- Enhance and provide ongoing support to the existing SMA patient registry in order to provide for expanded research on the epidemiology of SMA.
- Establish an SMA Coordinating Committee, consisting of representatives from relevant government agencies and the public, to coordinate government activities relating to SMA, serve as the principal advisor to agency heads, and conduct a study to identify barriers to the development of drugs for treating SMA and report findings and legislative recommendations to Congress.
- Require the Secretary of Health and Human Services to collaborate with the FDA and the Coordinating Committee to make recommendations for improving and expanding existing industry incentives to promote SMA drug development.
- Establish and implement a program for providing information and education on SMA to health professionals and the general public related to advances in the diagnosis and treatment of SMA and the provision of care to SMA patients.
Although SMA has been selected by the NIH and NINDS as
the closest disease to treatment of more than 600 neurological disorders and The
SMA Treatment Acceleration Act will initially focus on SMA, the results and
benefits will extend well beyond SMA. As researchers make progress unlocking a
cure for SMA, their work is also making strides toward understanding and
possibly curing a number of other rare and not so rare conditions. The following
diseases and disorders will receive a "collateral benefit" from SMA research:
- ALS/Lou Gehrig's Disease
- Alzheimer's Disease
- Parkinson's Disease
- Deafness-Dystonia
- Duchenne Muscular Dystrophy
- Fragile X, Friedreich's ataxia
- Gaucher Disease
- GM2A (AB Variant of GM2 Gangliosidosis)
- Machado-Joseph Disease,
- Menkes Disease
- Metachromatic Leukodystrophy: Late Infantile
- Myotonic Dystrophy
- Neuronal Ceroid Lipofuscinosis (Batten Disease): Infantile, Late Infantile, Classic Late Infantile, and
- Niemann-Pick Disease (NPD)
- Sialidosis and Galactosialidosis
- Spinocerebellar Ataxia Type 1
- Spinocerebellar Ataxia Type 2/Episodic ataxia type 2
- Spinocerebellar ataxia type 6,
- Spinocerebellar Ataxia Type 7 (olivopontocerebellar atrophy with retinal degeneration)
- Tay-Sachs Sandhoff, and X-Linked Andrenoleukodystrophy (ALD)
As you know, legislation like this will only move
through Congress with broad support and Members are significantly more likely to
cosponsor and support legislation if their constituents are actively urging them
to lobby for support of the bill on their behalf. Thus, to help move this
legislation through the process WE NEED YOUR HELP IN SIGNING THIS
PETITION to make sure your Senators and district Representatives know
that this is an important piece of legislation to cosponsor.
As of July 12, 2008, there are 18 Senators and 63 Representatives in Congress
cosponsoring this legislation.
PLEASE SIGN THIS PETITION TO HELP CURE SPINAL MUSCULAR ATROPHY (SMA), THE #1
GENETIC KILLER OF CHILDREN UNDER THE AGE OF 2.