Help END the #1 genetic killer of young children!

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!

********

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.

********

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.

********

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.

********

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.

********

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!

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

********

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.

********

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.

********

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.

********

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.

********

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!
# 74,757:
11:06 am PST, Nov 7, GABRIELA PARRA AYALA, Peru
HI, BUENO SOLO PODER SABER Y ASI SENTIRME BIEN SOBRE LAS RESPUESTAS BUENAS Q DAN PARA PODER SALVAR A ESTOS NIÑOS QUE SUFREN DIA A DIA.
# 74,756:
9:32 am PST, Nov 7, Donna Burke, California
Our friend's Amy and Bob have a very sweet child with this disease. We hope that a cure can be found AS SOON AS POSSIBLE!
# 74,755:
5:46 am PST, Nov 7, Name not displayed, Rhode Island
# 74,754:
5:45 am PST, Nov 7, Name not displayed, Germany
# 74,753:
2:38 am PST, Nov 7, NOEL LOPEZ, Philippines
All babies should be given a chance to live and enjoy life. No baby deserves to endure the suffering brought about by SMA.

My first born son died of SMA when he was 7 months old. This was in 2006.

# 74,752:
9:33 pm PST, Nov 6, Deidre Basile, California
# 74,751:
8:26 pm PST, Nov 6, Kim Warren, California
# 74,750:
7:12 pm PST, Nov 6, Name not displayed, California
# 74,749:
7:11 pm PST, Nov 6, Name not displayed, California
# 74,748:
6:53 pm PST, Nov 6, Johnl Lister, New Jersey
# 74,747:
6:11 pm PST, Nov 6, Bridget Gardner, Missouri
# 74,746:
5:22 pm PST, Nov 6, Tiffany Saldana, Colorado
# 74,745:
2:04 pm PST, Nov 6, Pamela Gilfoyle-Lund, Massachusetts
God Bless......
# 74,744:
12:15 pm PST, Nov 6, Name not displayed, California
As a parent I want to make sure that my child, and future children, will have every opportunity to be healthy and happy. This disease takes away these hopes and desires of every parent and child it touches. If this bill can provide the opportunity to restore the promises and dreams of parents and the lives of the children suffering from it, then do what you were elected to do--to change this country for the better and protect its citizens.
# 74,743:
10:36 am PST, Nov 6, Name not displayed, Vermont
# 74,742:
9:53 am PST, Nov 6, Name not displayed, Texas
# 74,741:
7:51 am PST, Nov 6, Joyce Tully, Georgia
We just experienced the death of the 3-week old baby girl of a friend and felt the pain of this loss. Please find a cure.
# 74,740:
7:59 pm PST, Nov 5, Al Perales, Texas
# 74,739:
6:39 pm PST, Nov 5, Carla Leader, Ohio
Every baby deserves the chance to a future. Please help.
# 74,738:
6:23 pm PST, Nov 5, Sherrill Atherton, Oregon
We need to help these beautiful babies that have familys live breath without a machine or cough.I wouldnt want to live like that or see my child live from a machine would you.Think of your own children and lets make a difference,Made me cry.Sherrill Atherton
# 74,737:
4:44 pm PST, Nov 5, Name not displayed, Illinois
I have been blessed with two healthy children. I have a friend who's daughter suffers from this disease. It breaks my heart to see what this has done to her life and her parents. No one should have to suffer from any disease, there needs to be funding by the government to find a cure. Research needs to be done to find a cure! Please pass legislation to help find a cure!
# 74,736:
4:01 pm PST, Nov 5, Stephanie Sutton, Kentucky
Thank You and God Bless Everyone that signs this Petition!

My daughter, who is now 9 years old, was diagnosed 4 years ago with SMA III. Two years later she was diagnosed with BVVL which is very similar to SMA. So if I FIGHT for my daughter then I have to fight for SMA families too!

# 74,735:
3:39 pm PST, Nov 5, Allison Cranford, North Carolina
# 74,734:
1:06 pm PST, Nov 5, Name not displayed, Spain
# 74,733:
7:26 am PST, Nov 5, Deborah Wigley, Maryland
# 74,732:
6:37 am PST, Nov 5, Charlene Garcia, New Mexico
# 74,731:
10:36 pm PST, Nov 4, Name not displayed, California
# 74,730:
8:11 pm PST, Nov 4, Emily Waechtler, California
# 74,729:
6:49 pm PST, Nov 4, Linda Harris, Maryland
# 74,728:
6:10 pm PST, Nov 4, Name not displayed, Connecticut
I think it's very important for young parents to be screened. This is a horrible disease and I would like a cure for these babies.
# 74,727:
5:13 pm PST, Nov 4, Valerie Seymour, California
# 74,726:
12:42 pm PST, Nov 4, Debbie Vandergriff, Tennessee
# 74,725:
12:08 pm PST, Nov 4, Christopher Thomson, Arizona
# 74,724:
12:03 pm PST, Nov 4, Maria Zambrano, New York
we ask you to please stop SMA for our children

i don't have anyone directly affected by this horrible disease, but do have a heart and feel for these families. i have a 11 month baby who means the world to me and would do anything to protect her. i join this fight!

# 74,723:
11:41 am PST, Nov 4, Colleen Hollier, Michigan
My dear friend of over 9 years tried for 3 years to get pregnant. After 3 years of trying she had a beautiful baby girl who at 17 months cannot walk. With recent blood testing they have found she has SMA. My friend is also 4 months pregnant with another child that may have this very same thing.

This is so very important because there is no child that should have to endure this kind of handicap.

# 74,722:
9:47 am PST, Nov 4, Alexandra Wall, Florida
# 74,721:
9:13 am PST, Nov 4, Darin Bonnicksen, Washington
as a healthcare professional, RN, I am interested in all possible cures for all diseases, As a grandfather of a beautiful boy named Hunter who is diagnosed with SMARD I am especially interested in curing this terrible genetic defect
# 74,720:
7:37 am PST, Nov 4, Laura Skally, Virginia
I have a dear friend who only had 3 weeks with her little girl due to SMA. I know I was moved by her journey as she welcomed her girl to life and stayed with her through death. It is then that I learned bout this disease, which is a truly brutal disease, leaving parents with incredibly difficult decisions to make. I am a 2 time cancer survivor, and usually put my advocacy efforts there, but I can not ignore the need for SMA to be conquered. Please learn more about this and imagine yourself in these parents shoes.
# 74,719:
7:34 am PST, Nov 4, Katie Grote, New York
# 74,718:
7:31 am PST, Nov 4, Justin Kalnas, New Jersey
# 74,717:
6:26 am PST, Nov 4, Janann Hossaini, Virginia
# 74,716:
5:29 am PST, Nov 4, Name not displayed, Romania
# 74,715:
12:32 am PST, Nov 4, Lincoln Stannard, Illinois
# 74,714:
11:08 pm PST, Nov 3, Linda Miller, North Carolina
To watch one child suffer and one family's pain in MORE than too much! This SMA treatment Acceleration Act which was introduced in 2007 and now reintroduced in 2009 must be passed. This disease is a horrible existence and death that robs a child of all functions especially breathing, eating and moving. How cruel!

More stem cell research has to be done to rid people of this burden of a truly horrible disease.

# 74,713:
5:59 pm PST, Nov 3, Brian Kupstas, Massachusetts
My parents lost my brother to type 1 before I was born 42 years ago and now my own son has been diagnosed with type 2. It needs to stop!!!!!
# 74,712:
2:52 pm PST, Nov 3, Elizabeth Appy, California
# 74,711:
8:27 am PST, Nov 3, Jeb Mcpherson, California
# 74,710:
8:11 am PST, Nov 3, Amanda Johnson, Alabama
I have a niece that has type 1 sma. There is nothing at this time that can be done for her. And I am sure with some kind of research this children can be helped. But with no research how will we ever know. Please, help these little children.
# 74,709:
7:11 am PST, Nov 3, Carina Neuer, Germany
C.Neuer
# 74,708:
3:41 am PST, Nov 3, YASH SHIV, India
I My Self Having SMA iii I love to die because it is painful to live Pls help me will u ?

pls help it to make it large

# 74,707:
12:45 am PST, Nov 3, Name not displayed, Washington
# 74,706:
11:50 pm PST, Nov 2, MOURIER MYRIAM, France
# 74,705:
8:50 pm PST, Nov 2, Grace C, New Jersey
This is for those who are affected by SMA. Let's take a step to help end this.
# 74,704:
8:26 pm PST, Nov 2, Danneal Richards, California
I have three beautiful children but both my girls had a rough start. They couldn't breath on there own due to being premature however there was help for them and every parent should be able to say that. We have to help th babies without a voice and give them and there parents the help they deserve.

Everyday there is not a cure babies are suffering and dying and in this day and age with out technology there is no reason for that.

# 74,703:
2:26 pm PST, Nov 2, Ilene Minnich, California
# 74,702:
1:18 pm PST, Nov 2, Steve Winter, Arizona
Is legalising same sex marriage or abortion, more important to americanS and Congress right now then to fight this silent demon try to kill our kids??? wow this realy says alot about us..

my son is diagnose with sma and i cant tell you the heart ache it gives me to see him grow up not being able to run around outside and experiance mobility on his own..he is totaly dependent of Jesus and us to move him around!

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