Help END the #1 genetic killer of young children!

Target:

United States Senate and United States House of Representatives

Sponsored by:

Please take 30 seconds to sign PetitionToCureSMA.com to help END Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children!

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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.

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Our daughter, Gwendolyn Strong, was born perfectly healthy in October 2007, but was diagnosed with the terminal, degenerative disease SMA Type I at 6-months-old. Like all SMA children, Gwendolyn's mind and spirit are no different from that of any healthy child, but her body is failing her. After being told that there was nothing that could be done to save our baby, we started PetitionToCureSMA.com in July 2008 as something that we could do; a grassroots effort to drum up broad support for the SMA Treatment Acceleration Act. While we hold little hope that our petition or the passage of this legislation will impact our daughter's life, it is our passion to help raise awareness about SMA and further research towards finding that cure for future SMA generations.

You can read more about Gwendolyn's journey with SMA at GwendolynStrong.com.

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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.

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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.

For more information on the SMA Treatment Acceleration Act visit GovTrack.us.

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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.
Join Our Facebook Group. Join our Facebook group - http://www.facebook.com/group.php?gid=25651855063 - and invite your "friends" to join as well.
Twitter. Twitter the petition link and ask that your "followers" RT your tweets.
Blog. Post the link on your own blog and ask blogs you follow to do the same.

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Please take 30 seconds to to sign PetitionToCureSMA.com to help END Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children!

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.

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.

For more information on the SMA Treatment Acceleration Act visit GovTrack.us.

********

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.
Join Our Facebook Group. Join our Facebook group - http://www.facebook.com/group.php?gid=25651855063 - and invite your "friends" to join as well.
Twitter. Twitter the petition link and ask that your "followers" RT your tweets.
Blog. Post the link on your own blog and ask blogs you follow to do the same.

********

Please take 30 seconds to to sign PetitionToCureSMA.com to help END Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children!

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.

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We signed the "Help END the #1 genetic killer of young children!" petition!

# 77,665:

4:18 pm PST, Nov 20, Natasha Saffo, California

# 77,664:

4:06 pm PST, Nov 20, Megan Gore, California

# 77,663:

4:06 pm PST, Nov 20, Carissa Linder, Idaho

# 77,662:

3:59 pm PST, Nov 20, Mark Makai, California

# 77,661:

3:56 pm PST, Nov 20, Maureen Lavelle, New Jersey
Don't take away the families Hope that there will soon be a cure for SMA!

Why is the SMA Treatment Acceleration Act important to you?

# 77,660:

3:45 pm PST, Nov 20, Lavinia Bruno, Italy
children's suffrence is our responsability

# 77,659:

3:25 pm PST, Nov 20, Ashlee Marriner, New Jersey

# 77,658:

3:20 pm PST, Nov 20, Elizabeth Stevenson, California

# 77,657:

3:15 pm PST, Nov 20, Yoon Soo Lee, Massachusetts
We all need hope. A cure is better. The sooner we find a cure the less children we lose and the more hope we have for the future. I don't want to lose my hope nor my child; my niece who has SMA. I recently read that a cure is five years ahead of us. Let's make it in less. The finish line is in sight. This is when we have to run the hardest and not give up.

# 77,656:

3:09 pm PST, Nov 20, Cavedo Valentina, Italy

# 77,655:

3:07 pm PST, Nov 20, Kylie Mecham, Idaho

# 77,654:

3:07 pm PST, Nov 20, Pearl Lee, Hawaii

# 77,653:

3:07 pm PST, Nov 20, Rutigliano Monica, Italy

# 77,652:

3:04 pm PST, Nov 20, Rutigliano Daniele, Italy

# 77,651:

3:02 pm PST, Nov 20, Jay N. Cutler Cutler, New York

# 77,650:

2:57 pm PST, Nov 20, Tyler Allen, California

# 77,649:

2:55 pm PST, Nov 20, Rocío Andrea Rodríguez Guattini, Uruguay

# 77,648:

2:54 pm PST, Nov 20, Vince Price, Illinois

# 77,647:

2:46 pm PST, Nov 20, Laura Gorzek, Texas

# 77,646:

2:40 pm PST, Nov 20, Patrizia Rizzuto, Swaziland
Per ulteriori impatto, aggiungere un commento personale qui. Si dice sempre ognuno ha diritto di essere sano. Ma ancor più importante è OGNUNO HA DIRITTO DI VIVERE.

Perché è la SMA trattamento Acceleration Atto importante per te? Perchè il mio nipotino è nato con questa malattia.

# 77,645:

2:39 pm PST, Nov 20, Renee McGuire, North Carolina

# 77,644:

2:38 pm PST, Nov 20, Name not displayed, Pennsylvania
My friends grandson has SMA. I heard of SMA but have never been around a chlid with it. Jonathan is so smart and full of life even though he is in a wheelchair. Nothing is going yo stop him.

# 77,643:

2:37 pm PST, Nov 20, Name not displayed, Texas

# 77,642:

2:33 pm PST, Nov 20, Joseph Abraham Levi, Rhode Island

# 77,641:

2:29 pm PST, Nov 20, Jeff Thompson, Florida

# 77,640:

2:26 pm PST, Nov 20, Name not displayed, Arizona

# 77,639:

2:23 pm PST, Nov 20, Linda McKillip, New Jersey

# 77,638:

2:22 pm PST, Nov 20, Donna Bergh, Minnesota
I support legislation to help find a cure. Losing a baby or young child is a very devasting loss.

# 77,637:

2:22 pm PST, Nov 20, Ruben Valle, Spain
My dougther is ill

# 77,636:

2:21 pm PST, Nov 20, Francesca Parodi, Italy

# 77,635:

2:14 pm PST, Nov 20, Virgene Link, Washington

# 77,634:

2:08 pm PST, Nov 20, Giovanni Silva, New York

# 77,633:

2:08 pm PST, Nov 20, Cicirello Evelyne, France
cicirello evelyne

# 77,632:

2:07 pm PST, Nov 20, Evan Gross, Michigan

# 77,631:

2:04 pm PST, Nov 20, Alicia amelia nuñez Alicia amelia nuñez, Argentina

# 77,630:

2:01 pm PST, Nov 20, DIONIZY MACIEJEWSKI, Illinois
Nobody should have to live with this disease.

# 77,629:

2:00 pm PST, Nov 20, Jean Ann Wesselman, Texas
We need to make a life saving differnece for children and families who need it. Thank You.

I have worked 56 years in the health field and know the realities and needs. Thank you.

# 77,628:

1:58 pm PST, Nov 20, Jennifer Cibelli, New York
I spent over a thousand hours sitting with and playing with two children who have SMA. They are sister and brother and are now 12 and 10. Yesterday Danny. 10 got sent to a major hospital an hour away from home. his lung collapsed. and his o2 isnt reading above 90. last night they wanted to intubate him and when they were deciding, he whispered to his mom that he didnt want to die. this child is amazing. they both are and i have never seen two kids filled with life. it breaks my heart to know they might not be here long enough to show everyone.

# 77,627:

1:56 pm PST, Nov 20, Mark Napoli, New Jersey

# 77,626:

1:47 pm PST, Nov 20, Jean Rice, Virginia
Please sign the SMA Treatment Acceleration Act. Funding for research is desperately needed so that a cure can be found as soon as possible to save these dear little babies. How tremendous it would be if research would help eradicate this disease before any more parents and children are affected by this heartwrenching illness.

Two dear friends of mine have a baby with SMA. They have worked tirelessly to save their little girl. Time is running out; they desperately need help.

# 77,625:

1:44 pm PST, Nov 20, Susan Sheehan, Pennsylvania

# 77,624:

1:41 pm PST, Nov 20, Michelle Humphreys, Ohio
My nephew

# 77,623:

1:41 pm PST, Nov 20, Michael Kenney, Tennessee

# 77,622:

1:36 pm PST, Nov 20, Katie Zacharias, Minnesota

# 77,621:

1:36 pm PST, Nov 20, Brian Doebereiner, Wisconsin

# 77,620:

1:23 pm PST, Nov 20, Michelle Geaney, Ireland

# 77,619:

1:18 pm PST, Nov 20, Gwendolyn Davis, Colorado
SMA may be the #1 genetic killer of young children but hardly anyone knows about it. Imagine being a new parent and being told that your child has a genetic disorder that you have never heard of before. With more public knowledge, parents can do genetic testing before the child is born and find ways to prevent their child from getting sick. This can also be done by testing the parents genes to see if either is a carrier.

# 77,618:

1:15 pm PST, Nov 20, Hilary Denman, California

# 77,617:

1:09 pm PST, Nov 20, Pastor Monzó María, Spain
I wish you had good luck

# 77,616:

1:09 pm PST, Nov 20, Heather Shank, Colorado
A wonderful couple, two very close friends of mine lost their bright, beautiful, and happy little twin girls at the age of six months. This tragedy has changed everyone's lives who knew them. This was powerless time that caused a lot of extremely difficult choices and everlasting sadness.

# 77,615:

12:56 pm PST, Nov 20, Christina Nyakundi, New Jersey
No child should have to live with this disease. Please pass legislation to provide funding find a cure and let our children loive a long and healthy life.

My friend's grandson has SMA and it is difficult to watch this beautiful child and his family struggle with the daily activities of life. He is always smiling despite his infirmities and is a blessing to all who know him. Please help Peter and his family.

# 77,614:

12:54 pm PST, Nov 20, Name not displayed, Illinois

# 77,613:

12:53 pm PST, Nov 20, Tara Roth, Texas
Please help!!

# 77,612:

12:44 pm PST, Nov 20, Sophia Kerschbaum, Mississippi

# 77,611:

12:43 pm PST, Nov 20, Jeff Dearman, Massachusetts

# 77,610:

12:43 pm PST, Nov 20, Kathleen Vitulli, New York

# 77,609:

12:42 pm PST, Nov 20, Name not displayed, California

# 77,608:

12:31 pm PST, Nov 20, Giulia Agostini, Italy

# 77,607:

12:24 pm PST, Nov 20, Marco Barra Caracciolo, Italy

# 77,606:

12:19 pm PST, Nov 20, Laurence Howard, California

# 77,605:

12:15 pm PST, Nov 20, Marilyn Mazur, Florida

# 77,604:

12:15 pm PST, Nov 20, Elizabeth O'Sullivan, New York
Please help.

# 77,603:

12:13 pm PST, Nov 20, Juliet Carvajal, Massachusetts
Please sign the SMA Treatment Acceleration Act! If we can only give these babies a life - by signing this act we'll surely get there! Sincerely, J. Carvajal Westfield, MA

This is important to me as it is essential we try to save our babies, who through no fault of their own find themselves on precarious ground.

# 77,602:

12:03 pm PST, Nov 20, Name not displayed, Ohio

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