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!
# 85,516:
2:54 am PST, Feb 10, Carla Smith, United Kingdom
I have a beautiful friend who lost her daughter to SMA... its a cruel disease i hope with all my heart that a cure is found. xx
# 85,515:
11:26 pm PST, Feb 9, Daniela Esmella, Argentina
Soy mama de una hermosa niña de 5 años con SMA tipo 1, ella es nuestra razon de vivir y no hay un día que no Soñemos con que la cura para el SMA por fin se ha logrado, no solo por mi Camilita sino por millones de Niños que no Merecen morir.

Por mi pequeña hija , para no estar pensando todos los dias que su enfermedad es una sentencia de muerte y porque todos los niños con SMA tenga la esperanza de una vida mejor !

# 85,514:
11:15 pm PST, Feb 9, Daisy Geentjens, Belgium
# 85,513:
9:58 pm PST, Feb 9, James Bayne, Mississippi
# 85,512:
7:56 pm PST, Feb 9, Deborah Donovan, Georgia
# 85,511:
7:10 pm PST, Feb 9, Mildred Martin, Georgia
# 85,510:
6:42 pm PST, Feb 9, Debbie Eskew, Kansas
My grandson has been diagnosed with type 1 of this horrible killer, he is only 1 month old. This disease is destroying my family. We need a cure.
# 85,509:
6:02 pm PST, Feb 9, Laura Mack, Michigan
I have a dear friend and former co-worker who has 2 beautiful grandaughters with SMA.

I want her to have the opportunity to watch her grandaughters grow up.

# 85,508:
4:57 pm PST, Feb 9, Brittney Runnion, Georgia
Lets do our part to cure this awful killer of children.
# 85,507:
4:05 pm PST, Feb 9, Karen Anthony, Michigan
# 85,506:
3:57 pm PST, Feb 9, Kristi Knotts, California
# 85,505:
3:49 pm PST, Feb 9, Debra Webb, Wisconsin
Help us find a cure!!!

My grandson died from SMA.

# 85,504:
3:40 pm PST, Feb 9, Gavin Shafron, California
# 85,503:
3:39 pm PST, Feb 9, Frank Noaln, California
# 85,502:
1:19 pm PST, Feb 9, Susan Langford, Nebraska
My niece Samantha Bennett has been diagnosed with SMA 1. She was born in September '09 and diagnosed in November '09.
# 85,501:
12:40 pm PST, Feb 9, Alice Cleveland, Georgia
Our children are our hope and our future; we need to protect them for the lives they will live and the things they will accomplish.
# 85,500:
11:37 am PST, Feb 9, Janet Imbus, Iowa
My Great Grandaughter was just dignosed with this disorder, All I can say is please help find a cure! My prayers and Love go out to all of you who have this to deal with.
# 85,499:
11:25 am PST, Feb 9, Sheila Murphy, Nevada
# 85,498:
11:24 am PST, Feb 9, Elayne Gamble, Mississippi
# 85,497:
11:04 am PST, Feb 9, Paula Johnson, California
My prayers are with you.
# 85,496:
10:14 am PST, Feb 9, Amanda Andrews, Alabama
# 85,495:
10:10 am PST, Feb 9, Amber Scherbak, Nebraska
My niece Samantha was recently diagnosed with SMA Type 1. My family and I have never heard of this genetic killer yet my sister and her husband are both carriers. Please help spread awareness and find a cure!
# 85,494:
10:03 am PST, Feb 9, Brenna Karbel, Michigan
# 85,493:
9:45 am PST, Feb 9, Diana Gibson, New York
# 85,492:
9:07 am PST, Feb 9, Platte Hunter, Louisiana
The importance of national clinical trials and a patient registry cannot be overstated. If performance enhancing drugs in Major League Baseball warrants Congressional hearings, then surely legislation to forward the progress of research on SMA, ALS/Lou Gehrig's disease and other genetic killers should be a priority.

I sign this petition in honor of Mark and in memory of Frank.

# 85,491:
8:28 am PST, Feb 9, Krystina Bristol, Michigan
# 85,490:
8:26 am PST, Feb 9, Jo Wilson, Mississippi
# 85,489:
7:52 am PST, Feb 9, Melissa Jackson, Tennessee
My 8 year old daughter suffers with SMA. Please help my child and children like Savannah all over the world!
# 85,488:
7:17 am PST, Feb 9, Gerry Inman, Michigan
In memory of Jordyn Hipkins...precious little one that was taken from the loving arms of her momma and daddy way to soon...
# 85,487:
5:49 am PST, Feb 9, Name not displayed, Canada
# 85,486:
5:43 am PST, Feb 9, Jessica Pierce, Nebraska
# 85,485:
5:14 am PST, Feb 9, Mary Benson, Mississippi
# 85,484:
10:49 pm PST, Feb 8, Shiloh Oliver, Washington
# 85,483:
10:48 pm PST, Feb 8, Pamela Bunker, United Kingdom
# 85,482:
8:43 pm PST, Feb 8, Rachel Kirsch, Illinois
# 85,481:
8:35 pm PST, Feb 8, Name not displayed, Arizona
In honor of Samantha Marie Bennett (Lincoln, Nebraska)
# 85,480:
8:34 pm PST, Feb 8, Misque Boswell, California
# 85,479:
8:05 pm PST, Feb 8, Angela Everley, Nebraska
Please support this cause! It is no good when you have friends who have a child with this unbearable genetic disorder! We need to find a cure for it so we stop the suffering among our friends and family!
# 85,478:
7:19 pm PST, Feb 8, Laura Bennett, Nebraska
Our 4 month old daughter Sam also has SMA type 1. We love her so much and would do ANYTHING ANYTHING in the world to help her. Please check out our web to see how beautiful she is http://www.babyhomepages.net/ourbabybennett
# 85,477:
7:15 pm PST, Feb 8, Preston Conley, Texas
# 85,476:
6:02 pm PST, Feb 8, Tasi Hannemann, Nevada
# 85,475:
6:01 pm PST, Feb 8, LaDonna McKinney, Illinois
# 85,474:
5:51 pm PST, Feb 8, Vikki Sell, Wisconsin
As a RN in a pediatric intensive care unit I see how devastating this disease is for everyone who comes into contact with a child who has it. These kids can only fight for themselves so much. We must advocate for them. Too many children have lost their lives from this...lets stop it before anymore have to die.
# 85,473:
5:51 pm PST, Feb 8, Name not displayed, Canada
# 85,472:
5:35 pm PST, Feb 8, Name not displayed, Colombia
soy madre de 20 años de edad, mi unico hijo tiene 9 meses de nacido y tiene ame I, esto me angustia por favor ayudenos.

¿Por qué la Ley de SMA de aceleración del tratamiento importante para usted? por que deseo que una ves se diagnostique un paciente con AME se le inicie un tratamiento o cura..

# 85,471:
5:20 pm PST, Feb 8, Stacy Press, Pennsylvania
# 85,470:
5:16 pm PST, Feb 8, Katie Stallard, Virginia
# 85,469:
3:45 pm PST, Feb 8, Name not displayed, Georgia
# 85,468:
3:34 pm PST, Feb 8, Amanda Kaplan, Connecticut
# 85,467:
2:55 pm PST, Feb 8, Name not displayed, Georgia
See comment below.

We have just learned that our 2 month old grand daughter has SMA. We have yet to receive the final diagnosis if it is type 1, 2, etc. It is gut wrenching. To think that this beautiful baby will not get to grow up and have her own life and grandchildren is beyond comprehension. We never heard of this disease until her diagnosis and to think that it is the #1 killer of babies is unbelievable. Yet this whole situation is unbelievable.

# 85,466:
1:06 pm PST, Feb 8, Melissa Lewis, California
Please do all that you can to find a cure.
# 85,465:
1:03 pm PST, Feb 8, Name not displayed, United Kingdom
# 85,464:
12:28 pm PST, Feb 8, Name not displayed, Belgium
# 85,463:
12:25 pm PST, Feb 8, Kari Anderson, North Carolina
One of my friends recently had her first child, and she has been diagnosed with SMA. I am praying for a miracle, but would appreciate help and support in research.
# 85,462:
12:07 pm PST, Feb 8, Sigurd Idland, Norway
# 85,461:
11:35 am PST, Feb 8, Kristy Jack-Baarda, Iowa
# 85,460:
11:14 am PST, Feb 8, Name not displayed, Tennessee
# 85,459:
11:09 am PST, Feb 8, Name not displayed, Wisconsin
# 85,458:
10:06 am PST, Feb 8, Brian Pane, California
Good Luck!
# 85,457:
8:26 am PST, Feb 8, Name not displayed, Colorado
# 85,456:
7:11 am PST, Feb 8, Nick Beyer, Iowa
# 85,455:
6:57 am PST, Feb 8, Name not displayed, Iowa
# 85,454:
6:36 am PST, Feb 8, Name not displayed, Spain
# 85,453:
6:17 am PST, Feb 8, Craig Schwartz, Iowa
Parenting is a very challenging task with healthy kids. But to have to add all the emotional stress and medical uncertainties that come with SMA must be tremendously taxing. It's so sad that a country like ours has not been able to devote the necessary research to deal with the SMA issues. I hope this petition helps to further it along.
# 85,452:
6:08 am PST, Feb 8, Jodee Kelly, Michigan
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