This petition is 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 son, Ryan, was diagnosed with SMA type 1 on May 27th, 2009 on his 4 month birthday. Each day that we have with Ryan is a gift as his life on earth will be shortened by this disease. Please help us Fight For Ryan and for other families and children with SMA. Your support is so important to help find a cure.
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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.
Post a link on your blog and ask blogs that 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!
Sincerely, Christopher & Jennifer Hawn
This petition is 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 son, Ryan, was diagnosed with SMA type 1 on May 27th, 2009 on his 4 month birthday. Each day that we have with Ryan is a gift as his life on earth will be shortened by this disease. Please help us Fight For Ryan and for other families and children with SMA. Your support is so important to help find a cure.
********
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.
Post a link on your blog and ask blogs that 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!
Sincerely, Christopher & Jennifer Hawn
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.
We signed the "Fight For Ryan, Help Cure SMA" petition!
# 914:
4:42 pm PST, Nov 17,Tiffany Cheng, Canada
# 913:
10:26 pm PST, Nov 8,Cathy Joiner, Missouri
i went to school with chris, and it breaks my heart that this horrible tagedy had to happen to his sweet little baby. my thoughts and prayers are with you,your wife, and beautiful daughter.
# 912:
8:25 pm PDT, Oct 31,Kara Swofford, Missouri
# 911:
3:45 pm PDT, Oct 21,Rossi Holland, Florida
# 910:
1:54 pm PDT, Oct 19,Ed Cavaciuti, Delaware
My son died from SMA. His name was Ryan also......
# 909:
6:22 am PDT, Oct 17,Lisa Robinett, Ohio
# 908:
8:34 am PDT, Oct 15,Gene Zeiger, Missouri
# 907:
2:50 pm PDT, Oct 14,Heidi Monk, Missouri
# 906:
2:56 am PDT, Oct 12,Timothy Elliott, Missouri
Please work on this bill for those that have been so impacted by these diseases!
# 905:
8:09 pm PDT, Oct 8,Lisa Shockley, Florida
# 903:
9:21 am PDT, Sep 29,Kelly Branscum, Missouri
# 902:
8:25 am PDT, Sep 20,Addison Stotts, Missouri
I'm sorry about Ryan.
# 901:
6:27 pm PDT, Sep 13,WILLIAM COX, Missouri
i have a granddaughter who is very very ill, near death and needs help and prayers as do all children, whom i have great passion for
\goverment it seems can find monies to help business and other countrys they need to help us
# 900:
5:24 pm PDT, Sep 13,Valerie LaManna, New Jersey
# 899:
1:54 pm PDT, Sep 13,Maggie Torbeck, Missouri
My mom's co worker is the parent educator for the child.
# 898:
7:22 pm PDT, Sep 9,Paula Ballew, Missouri
I am in support of the SMA Treatment Acceleration Act. We must stop these diseases that take our children from us. Please....it is critical that this Act be passed.
# 897:
1:33 pm PDT, Sep 9,Name not displayed, Missouri
I help/support the MDA and this Act is so important for all children. Each child with this disease deserves the best of out of life and to live a long life.
# 896:
11:57 am PDT, Sep 8,Marla Artz, Missouri
# 895:
7:18 pm PDT, Sep 6,Tyson McKibben, Oklahoma
# 894:
8:59 pm PDT, Sep 4,Sharon Barton, Missouri
# 893:
12:16 pm PDT, Sep 4,Tonya Cook, Indiana
My grandson has SMA Type2 and want to see more research done for these precious children
# 892:
5:36 pm PDT, Sep 2,Megan Miller, Missouri
I think we need to give our children the chance to fight for their lifes.
# 891:
11:47 am PDT, Sep 2,Lacey Childress, Missouri
# 890:
11:17 am PDT, Sep 2,Lindsay Eulitt, Oklahoma
My husband and I lost a child to SMA type I at the age of 3 months. It is so hard to lose the loss of anyone, but especially your child at such a young age. Knowing that there is the potential for your children to also carry this gene and possibly have to face the same challenges that we have is why we need to find a cure for Spinal Muscular Atrophy.
# 889:
10:21 am PDT, Sep 2,Carla Parker, Missouri
# 888:
9:30 am PDT, Sep 2,Dana Jennings, Missouri
# 887:
9:30 am PDT, Sep 2,Abby Lynn, Missouri
# 886:
9:10 am PDT, Sep 2,Name not displayed, Missouri
# 885:
9:05 am PDT, Sep 2,Alexis Gardner, Missouri
# 883:
10:41 am PDT, Sep 1,STEVE MILLER, Georgia
# 882:
8:49 am PDT, Sep 1,Beatriz Hill, Illinois
It's about the kids!!
# 881:
8:02 am PDT, Sep 1,Julie Goheen, Illinois
# 880:
8:25 pm PDT, Aug 31,Stefanie Cowen, Missouri
# 879:
8:24 pm PDT, Aug 31,Chris Selinger, Missouri
My daughter had Turner syndrome - and I so feel your pain and loss.
# 878:
7:01 pm PDT, Aug 31,KIM DANNEGGER, Missouri
# 877:
2:33 pm PDT, Aug 30,Donna Johnstone, Missouri
# 876:
8:19 am PDT, Aug 29,Kevan Leimbach, Missouri
# 875:
4:23 pm PDT, Aug 27,Trish Voskovitch, California
my nephew has SMA and i hope there is a cure before he ends up in a wheelchair
# 874:
2:30 pm PDT, Aug 27,Jill Primm, Missouri
# 873:
12:08 pm PDT, Aug 27,Nathan Schlanker, North Carolina
# 872:
7:15 am PDT, Aug 24,Kristen Heath, Utah
# 871:
6:25 pm PDT, Aug 23,Laura Keller, Kansas
# 870:
9:34 am PDT, Aug 21,David Emmons, Missouri
I work with families that deal with the effects of SMA daily. We have to give them Hope.
# 869:
10:41 pm PDT, Aug 20,Name not displayed, Missouri
I don't personall know you but I can not imagine the pain you are feelin and hope that you get the signatures that you need
# 868:
1:57 am PDT, Aug 20,Leah Boulay, Missouri
# 867:
8:58 pm PDT, Aug 19,Alan Davidson, Kansas
# 866:
6:37 pm PDT, Aug 19,Amy Baker, Michigan
# 865:
8:37 pm PDT, Aug 18,Julie Farley, Missouri
# 864:
6:51 am PDT, Aug 18,Kristen Westbrook-Tatum, Missouri
# 863:
6:02 am PDT, Aug 18,Name not displayed, Michigan
# 862:
10:53 am PDT, Aug 17,Nathan Scherman, Kansas
I only know of this because my sister is friends with Jennifer, but my heart goes out to the Hawn family and any family who has lost a young child to disease. I have a 5 month old daughter and can't imagine the amount of pain and grief that must accompany such a tragedy. After reading the Hawn Family blog, I am impressed with and moved by their faith and understanding in this situation. I wish you all peace and comfort.
# 861:
9:38 am PDT, Aug 15,Kristy Whiteside, Missouri
# 860:
6:22 am PDT, Aug 15,Patricia Dominguez-Ortiz, Maryland
# 859:
10:57 am PDT, Aug 14,Rosann Blackmore O'Dell, Kansas
This effort is important for the greater advancement of medicine and research. Signing this petition is a first step to a long road of efforts.
# 858:
8:18 am PDT, Aug 14,Name not displayed, Missouri
# 857:
2:02 pm PDT, Aug 13,Ira Campa, Arizona
# 856:
12:26 pm PDT, Aug 13,Traci Cochran, Georgia
# 855:
6:41 am PDT, Aug 13,Robin Roderick, Missouri
Because I ministered to the Hawn family as Ryan died at 6 months and a few hours
# 854:
4:01 pm PDT, Aug 12,Laurie Hanline, Texas
# 853:
10:34 pm PDT, Aug 11,Kywana Cobbs, Missouri
# 852:
6:27 pm PDT, Aug 11,Carmen Sutton, Missouri
I didn't know baby Ryan or his family. I have followed his blog & my heart goes out to this family. Praise God, Ryan is in the hands of his creator now. However, his parents are suffering w/ pain. I pray God gives them the comfort they all need. We need to find a cure for such a terrible disease.
# 851:
1:17 pm PDT, Aug 11,Maureen Foster, Missouri
We need to find a cure
