Help cure the #1 genetic killer of children under 2

Help cure the #1 genetic killer of children under 2

Target:
United States Senate and United States House of Representatives
Sponsored by: 
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.
    • SMA is an inherited genetic disease that results in loss of nerves in the spinal cord and weakness of the muscles connected with those nerves.
    • SMA is the #1 genetic killer of children under the age of 2.
    • SMA is estimated to occur in nearly 1 out of every 6,000 births.
    • The gene mutation that causes SMA is carried by 1 in every 40 people or nearly 7.5 million Americans.
    • There is currently no treatment and no cure, but the National Institutes 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.
    • Researchers estimate that we are as close as only a few years away from finding a treatment and/or cure.
================

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.
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.
    • SMA is an inherited genetic disease that results in loss of nerves in the spinal cord and weakness of the muscles connected with those nerves.
    • SMA is the #1 genetic killer of children under the age of 2.
    • SMA is estimated to occur in nearly 1 out of every 6,000 births.
    • The gene mutation that causes SMA is carried by 1 in every 40 people or nearly 7.5 million Americans.
    • There is currently no treatment and no cure, but the National Institutes 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.
    • Researchers estimate that we are as close as only a few years away from finding a treatment and/or cure.
================

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.
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. 2042 and HR. 3334, the SMA Treatment Acceleration Act.  

SMA is the number one genetic killer of children under the age of two, occurring in about 1 of every 6,000 births; it is estimated that some 7.5 million Americans carry 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 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. 2042/HR. 3334 and thank you for taking the time to read this letter.
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We signed the "Help cure the #1 genetic killer of children under 2" petition!
# 43,971:
3:49 pm PST, Jan 9, Kristina Gwinett, Georgia
I saw the link on post secret. I can't do much, but whatever bit I can do to help-I do.
# 43,970:
3:48 pm PST, Jan 9, Jeanne M. RIVARD, Michigan
I have a grandson with genetic problems, so I know what it is to face them and I know we need to do all we can to research and fight and prevent and cure them.

We need to make a difference and we are negligent when there are things we can do and we do not do them.

# 43,969:
3:47 pm PST, Jan 9, Name not displayed, Canada
# 43,968:
3:47 pm PST, Jan 9, Elisa Minakis, Canada
# 43,967:
3:43 pm PST, Jan 9, Joma Cook, United Kingdom
I hope this signature helps to get one step closer to treating this disease
# 43,966:
3:42 pm PST, Jan 9, Sydney Bennet, California
There are far too many infants dying of SMA each year. With the research technology we currently posses, there is excuse not to be extensivly researching SMA and trying to find a cure.

This act is important to me because with the number of babies dying, we have to do something about it.

# 43,965:
3:41 pm PST, Jan 9, Name not displayed, Pennsylvania
# 43,964:
3:39 pm PST, Jan 9, Daniel Crutchfield, United Kingdom
Because of the emotion behind what was mentioned on Postsecret. Because I care, like that person.
# 43,963:
3:38 pm PST, Jan 9, Solo Amaya, California
please help
# 43,962:
3:37 pm PST, Jan 9, Ingrid Redding, California
Please support this important legislation!
# 43,961:
3:36 pm PST, Jan 9, Courtney Henderson, New York
# 43,960:
3:33 pm PST, Jan 9, Susan Vian, Michigan
# 43,959:
3:32 pm PST, Jan 9, Kyle Alden, Illinois
# 43,958:
3:31 pm PST, Jan 9, John Nulty, California
# 43,957:
3:31 pm PST, Jan 9, Jenine Schatz, Canada
# 43,956:
3:27 pm PST, Jan 9, Joanne Guy, Florida
# 43,955:
3:25 pm PST, Jan 9, ANTHONY WILSON, Mississippi
# 43,954:
3:24 pm PST, Jan 9, Name not displayed, California
God Bless the children and their families impacted by this disease. Please take action to find an effective treatment and/or a cure.
# 43,953:
3:20 pm PST, Jan 9, Name not displayed, Canada
# 43,952:
3:19 pm PST, Jan 9, Kendra Liss, Texas
# 43,951:
3:17 pm PST, Jan 9, Erin Keller, Indiana
# 43,950:
3:15 pm PST, Jan 9, Name not displayed, Idaho
# 43,949:
3:15 pm PST, Jan 9, Name not displayed, Illinois
# 43,948:
3:10 pm PST, Jan 9, Matthew Rizzo, Florida
# 43,947:
3:09 pm PST, Jan 9, Jessica Rose, California
# 43,946:
3:09 pm PST, Jan 9, Andrew Thomson, Illinois
# 43,945:
3:08 pm PST, Jan 9, Jenn Henderson, Canada
# 43,944:
3:08 pm PST, Jan 9, Lisa Johnson, Florida
# 43,943:
3:08 pm PST, Jan 9, Amanda Devine, South Carolina
# 43,942:
3:07 pm PST, Jan 9, Cathy Lambert, Massachusetts
Friend's 1yr old was just diagnosed with this terrible disease
# 43,941:
3:04 pm PST, Jan 9, Name not displayed, Oregon
# 43,940:
3:04 pm PST, Jan 9, Anise Maillet, Canada
# 43,939:
3:04 pm PST, Jan 9, Name not displayed, Florida
# 43,938:
3:03 pm PST, Jan 9, Name not displayed, Ohio
# 43,937:
3:02 pm PST, Jan 9, Jayme Pohlman, Oregon
# 43,936:
3:02 pm PST, Jan 9, Name not displayed, Tennessee
# 43,935:
3:01 pm PST, Jan 9, Juan Manuel Villalpando, Canada
# 43,934:
3:01 pm PST, Jan 9, DiAnne Goodwine, Arizona
Bill and Victoria you are two incredible people my prayers are with you and Gwendolyn.
# 43,933:
2:57 pm PST, Jan 9, Name not displayed, Wisconsin
A friends little girl has this and I want to help out! It's a very important cause and could save many lives.
# 43,932:
2:56 pm PST, Jan 9, Jamie Harmon, Texas
# 43,931:
2:55 pm PST, Jan 9, Name not displayed, Florida
Protect children.

They need a chance to grow up.

# 43,930:
2:48 pm PST, Jan 9, Nancy Owens, Delaware
I have never heard of this before, but if I had a child or grandchild diagnosed with this...I would beg, plead, and give blood, to find out how to fix it...without an iota of pride.

This is important to me because it seems like a horrific way for a child to die...it makes me sick thinking of the pain they must suffer, and the suffer their parents go through watching as it happens, with no way to change the outcome. We rely on our scientific community to find cures because we are not scientists...I don't understand how 'they' can possibly say that they are cash strapped and cannot do anything about it. We are the richest nation in the world...there is no excuse.

# 43,929:
2:47 pm PST, Jan 9, Name not displayed, Canada
# 43,928:
2:47 pm PST, Jan 9, Vanessa Pelton, California
# 43,927:
2:45 pm PST, Jan 9, Mia Desmedt, New York
# 43,926:
2:45 pm PST, Jan 9, Hailly Butler, Massachusetts
I work on SMA research and see the impact of this disease everyday. We are getting close to a cure but we need more help. In order to find a cure researchers like me need the help of children and families with and without SMA. I encourage you to seek out research opportunities in your area. You can make a difference.
# 43,925:
2:39 pm PST, Jan 9, Linda Cobb, Washington
# 43,924:
2:36 pm PST, Jan 9, Jenna Pfeiffer, New York
# 43,923:
2:34 pm PST, Jan 9, Jade Napoli, Florida
# 43,922:
2:32 pm PST, Jan 9, Jessica Smith, Pennsylvania
I hope that there will soon be enough signatures to stop this madness.

I feel strongly about this petition. I'm a babysitter and I know a lot of children who would be miserable if they had this disease. It's just reminds me a lot about children with cancer. Just think about all of those kids who are in danger of their lives right now as we speak. Please, help out this petition and sign your name.

# 43,921:
2:32 pm PST, Jan 9, Kirsten Berol, Maryland
thanks postsecret
# 43,920:
2:31 pm PST, Jan 9, Name not displayed, Minnesota
I thank God for being blessed with two healthy children. Not everyone is so lucky.
# 43,919:
2:30 pm PST, Jan 9, Avalon Castro, Massachusetts
# 43,918:
2:30 pm PST, Jan 9, Katrina Wilson, Oregon
# 43,917:
2:25 pm PST, Jan 9, Emily Brudwick, Wyoming
# 43,916:
2:24 pm PST, Jan 9, Megan Whalen, Massachusetts
# 43,915:
2:15 pm PST, Jan 9, Tori Stroup, Missouri
i would like to help with the genetic killer
# 43,914:
2:13 pm PST, Jan 9, Misty Flowers, Texas
I am an LVN and work with a little boy who has SMA.I hope that signing this will one day give him all of the oppurtunities that hw deserves in life.

All children deserve a chance.

# 43,913:
2:13 pm PST, Jan 9, Alyssa Niman, New York
# 43,912:
2:08 pm PST, Jan 9, Katharine Steel, Tennessee
There is no reason why this research shouldn't be funded; by finding a way to treat and cure this disease, you could be opening ways to find cures to other genetic diseases. These diseases affect so many lives, and finding cures to them should be a top priority.
# 43,911:
2:07 pm PST, Jan 9, Jana Dunaway, Texas
EVERY human life is of infinite value!
# 43,910:
2:06 pm PST, Jan 9, Name not displayed, New Jersey
# 43,909:
2:03 pm PST, Jan 9, Alicia Marie, Pennsylvania
# 43,908:
2:02 pm PST, Jan 9, Anne Bauer, Ohio
Dealing with this through early intervention will save money in the long run, for all of you financial folks!

Any disability that can be addressed is of concern of all of us!

# 43,907:
2:02 pm PST, Jan 9, Vincent Durand, France
I will have children one day. I wish the best for them. That implies being in good health.
# 43,906:
2:00 pm PST, Jan 9, Kimberley Siler, Colorado
If only there was a cure my 7 month old niece would still be alive.... I love and miss you greatly Delilah!!!
# 43,905:
1:59 pm PST, Jan 9, Aileen Arce, Florida
My best friend's daughter has been affected by SMS and it really hurts to see your loved ones go through this. My heart goes out to her, her family and the rest of people suffering from SMS. Let's find the cure!
# 43,904:
1:54 pm PST, Jan 9, Name not displayed, Pennsylvania
The children and the families that would be saved by this act are my motivation for signing this petition. The research involving SMA is vital if it can also possibly provide links to treatment for other neurological disorders. If scientists truly believe that treatment for this disease is so close, perhaps cures for other diseases are not so far away.
# 43,902:
1:51 pm PST, Jan 9, Courtney Sherman, California
# 43,903:
1:51 pm PST, Jan 9, Collette Dougherty, Virginia
# 43,901:
1:48 pm PST, Jan 9, Name not displayed, California