How People Voted
 |
 |
97% For, 3% Against
Take Action
  |
Alert Your Friends and Colleagues |
  |
Write Your Representative in Congress |
| Save & Share | |
 |
del.icio.us |
 |
Digg |
 |
|
 |
|
 |
|
 |
Yahoo! |
S. 2042, The SMA Treatment Acceleration Act (124 comments ↓)
- This item is from the 110th Congress (2007-2008) and is no longer current. Comments, voting, and wiki editing have been disabled, and the cost/savings estimate has been frozen.
S. 2042 would authorize the Secretary of Health and Human Services to conduct activities to rapidly advance treatments for spinal muscular atrophy, neuromuscular disease, and other pediatric diseases.
()
Learn More
Visitor Comments 
vass
November 19, 2008, 7:05pm (report abuse)My god child is lilly who has type 1 sma and it is quiet heartbreaking for me to watch her deteriorate. i am an advocate in australia and most of the work that i do is in the childrens court and family court assisting children. i feel helpless that i can not help my own godchild however through means such as this i cant try. i would urge the government to pass this bill ASAP as it is long overdue given that sma is the no. 1 killer of infants. Family and children are precious in our society esp in this day and age and passing this bill will assist so many families who want to provide for their children. My prayers go out to all parents and children and to my little lilly xo
Crystal (australia)
November 19, 2008, 9:25pm (report abuse)please pass this bill! if it was your child u would want it for your child! imagine u being told your child has type 1 sma and be told they will not make it to 2 years of age! that is just heart breaking .. i think its murder if this bill is not passed....
virginia australia
November 19, 2008, 9:46pm (report abuse)please pass this bill children are our future its our job to protect them and do any thing we can to make them better
stephanie duquette(canada)
November 19, 2008, 10:38pm (report abuse)This bill would mean so much to the future of children and adults world wide who don't just suffer from SMA and other dieases similar to SMA. I am watching what my sister goes through each day as my 8 month old niece lays in a hospital bed hooked up to a bi-pap machine helping her breath and keeping alive. I watch her trying so hard to want to move as any 8 month old should and she can't. The 24 hr care she needs, the tired faces of her mom and dad trying to help Enna, workig in shifts and have no way to help her move they way she wants. I see the worry in their faces of losing her at each d-stat. She still smiles for now, My sister is praying daily for a miracle and this bill can be that miracle. I and my family hope that tis can be done before enna's beautiful smile dissappears along with her parents smile.SMA children have such little time PLEASE VOTE.
Georgia nsw Australia
November 20, 2008, 12:00am (report abuse)Who would vote against this cause? You would have to have some serious issues! Talk about heartless. GO FOR CHILDREN'S HEALTH, too precious. Got my vote ' FOR ' OF COURSE!!!!!!
Nicole
November 20, 2008, 12:53am (report abuse)Do it for Beau and every other family who have been effected by SMA.
Rani Coleman
November 20, 2008, 6:18am (report abuse)I have been touched by SMA. My friends recently had their first baby, a beautiful girl, Lilly. At first Lilly was given a clean bill of health and went home with her delighted parents to start their new life as a family. When Lilly started to loose strength in her arms and legs and could not hold her head up, and after strenuous investigations, Lilly's parents were told the devastating diagnosis that Lilly has SMA type 1. THE SHEER HORROR OF THIS CONDITION IS AN UNIMAGINABLE TORTURE TO BOTH LITTLE LILLY & HER PARENTS. If the SMA Treatment had been accelerated, these wonderful people would at least be able to do something to help keep their little babies alive and to start the process of Clinical Trials so that SMA babies of the future are not handed a death sentence. IT IS UNFATHOMABLE TO NOT START THE TRIALS ON BABIES THAT HAVE ABSOLUTELY NOTHING TO LOSE & EVERYTHING TO GAIN. HOW CAN ANY SOUND MINDED PERSON DENY A CHILD THE RIGHT TO LIFE & THEIR FAMILIES A LIGHT OF HOPE.
Russell Gilchrist
November 20, 2008, 6:20am (report abuse)We lost our daughter Ava to SMA Type 1 in Feb of this year at 114 days. Please put yourself in the position of watching your child's health deteirorate and wanting more than anything to help them or stop it and being completely powerless. It is far worse than you can ever imagine. This is the situation parents find themselves in with SMA and it is beyond words to describe how painful and heartbreaking it is. Please look at any photos of a baby or child with SMA at sma organisation websites before casting a vote for a bill such as this. Thank you.
Kylie - Australia
November 20, 2008, 6:54am (report abuse)No family should have to see their child suffer. Please pass this bill now to help stop the suffering.
Jo - Australia
November 20, 2008, 7:23am (report abuse)I can't believe that this is even an issue. Children and their health should be put first. Please pass this for Lilly and all the other children who suffer from this. Prayers are with you Lilly and all others in this predicament..
Rebecca Gillard (Australia)
November 20, 2008, 8:19am (report abuse)Don't let anymore beautiful babies be lost to this horrendous disease. Stop the suffering - Please pass this bill for gorgeous little Ava and all the other bubs who should not have to go through this. Children are our future and all children are precious.
Germaime (Hong Kong)
November 20, 2008, 9:02am (report abuse)Pls pass the bill and save all the SMA patients around the world, help advancing a cure to this terrible disease. I hope my SMA Type I daughter can just breathe and eat on her own some day, which is not far away!
Fleur HIcks-Duarte
November 20, 2008, 9:49am (report abuse)This would benefit so many people, please let's be proactive.
Jane
November 20, 2008, 7:17pm (report abuse)Don't beat around the bush on this - pass the bill - for Beau, and all the other children waiting...waiting...
Jane Gilchrist (Australia)
November 20, 2008, 9:48pm (report abuse)Please please pass this bill! It's effects will be global! I have watched my brother Russell and his beautiful partner Lucinda's life be shattered as we had to watch their beautiful daughter Ava die. She never even got to come home. We never got to hold her or hear her cry even. This is a horrible way to let kids die - if you vote no how would you like to be told that your child, niece, nephew, brother, sister, grandchild, god-child or friend's child is going to die and there is absolutely nothing that can be done - absolutely no hope. Please pass this bill for Ava!!!!!!!!!!
Lee Mackay
November 20, 2008, 10:33pm (report abuse)I agree with all of the above. We lost our baby girl, Taylin Amily, to SMA Type 1 in Jan this year at 4 and a half months old. Bring it on so that other families don't have to go through what we went through and poor innocent children don't have to suffer.
Chelsea
November 21, 2008, 12:16am (report abuse)Please pass this bill! no family should have to deal with this!!! Something needs to be done.
Jacinta Preis (Australia)
November 21, 2008, 12:25am (report abuse)Please pass this bill, please don't let families go through what the above families have and are going through. This should not even have to be decided is should be a given right of these children to have any and everything which can be possibly done. I agree with a poster above who says is will be murder NOT to pass the bill.
Janette Brown
November 21, 2008, 12:36am (report abuse)I just lost my 7 month old grand daughter sept 08.
Please pass this bill. Stop the loss of life of these precious babies!
Leah Maker
November 21, 2008, 1:34am (report abuse)SMA is a terrible, terrible disease. I now know two beautiful babies that have died as a result. My thoughts and prayers are still with Russel and Lucinda who lost beautiful Ava early this year. Please pass this bill.
Lauren Watson.
November 21, 2008, 4:02am (report abuse)If you do not pass this bill, you are failing hopes and dreams of families world-wide. Take notice and have a heart. x.
Nancy Boyd
November 21, 2008, 10:12am (report abuse)SMA Type 1 tragically struck our home and our family this past summer when our granddaughter was diagnosed with type 1, a terminal disease. We lost her on September 27, 2008. She was given the best care at UCSF, but there was no hope of survival to precious Lorelei Lea. Our daughter, Cynthia, will never be the samewith the loss of her only child. PLEASE PASS THIS BILL.
BeausMummy
November 21, 2008, 11:20pm (report abuse)http://www.facebook.com/groups.php?ref=sb#/group.php?gid=25116738404
Dee Beencke
November 22, 2008, 1:21am (report abuse)Being A mother and Grand mother I would vote 4 anything 2 save these beautiful little angels we r blessed with xxx
Manda
November 22, 2008, 7:41pm (report abuse)Look any child, mother, father, family member or friend of a child suffering from SMA in the eyes and tell them why this Bill shouldnt be passed.
There is no need for debate, pass the bill now. the time for talk is over these children need action!
suz
November 23, 2008, 5:07am (report abuse)no child should have to suffer in any way pass the bill and help them live!
Marree
November 23, 2008, 5:19am (report abuse)Please pass the bill...children should never have to go through this nor should their families.
rose
November 23, 2008, 6:38pm (report abuse)pass the bill..you have the power to save lives.. so pass the bill
Amy Hanger
November 24, 2008, 10:12pm (report abuse)Pass the bill...anything that may give hope to these suffering families should be passed.
Katie
November 25, 2008, 12:59pm (report abuse)Please pass this bill!!! It seems an insanity that this is even in question! Pass the bill for beautiful Ava and all the other babies and families who have suffered and who are suffering x
Natasha (Australia)
November 25, 2008, 3:11pm (report abuse)Please pass this bill, children are such a special gift. You help one child its a success.
Debbie Gill (Australia)
November 25, 2008, 7:14pm (report abuse)I can't believe that the bill is even in question,I am the aunt of Stella Matt and Lilly Robyn,every child should be given every opportunity to live their lives to the fullest,their families the opportunity to love and nurture them forever.Please help all the families affected to fullfill their dreams..... Imagine...............I dont think you can
Mia Yena
November 26, 2008, 7:53am (report abuse)This is just a horrible, horrible thing that any parent and child should have to go through. Please help pass the bill...
I can't even begin to comprehend that nothing is yet being done to help cure all the children affected by this!
Our love & prayers go out to Stella, Matt & Lilly Robyn and to all going through this xox
Linda
November 28, 2008, 4:58pm (report abuse)Cannot imagine the heartache ... watching your child slowly deteriorate. Pass this bill . who in the world could vote AGAINST it?
L. Malishev
November 29, 2008, 3:50am (report abuse)Any disease is a pain. It is physical and emotional suffering that a sick person and his/her family are going through. But even worst case patients have HOPE that one day they will be disease free.
Well, we don’t have this HOPE, yet. We watch our little brave fighters getting weaker day after day, unable to explain why there is no medicine to help him/her sit, walk, and breathe independently.
Please save our children
Please give us HOPE
Paul Considine
November 30, 2008, 6:47pm (report abuse)PASS the bill NOW !!!! Stop spending money on destroying lives, and start spending it to save them instead ! We only get one life, let this bill try to prolong more lives for the futures sake !
Robyn Bell
November 30, 2008, 7:41pm (report abuse)I am the Nanny of Lilly Robyn. If we can help by joining this list so be it What I don't understand is why with all these Australians on the list Australia doesn't have its own clinical trials ready to go. Let's get an Australian list. Email Matt and Stella or me through face book. We are ALL praying for a cure - but we need more than prayers!!!
Chad Vandiver
December 1, 2008, 11:45pm (report abuse)SMA is the #1 genetic killer of children under 2. This bill could help us find a cure. Please support this bill to help the innocent children suffering from this disease.
Jim Biolsi
December 4, 2008, 4:32pm (report abuse)This Bill is really needed. There are so many families devestated by this terrible disease. What a tragedy!
Donna in Davis
December 16, 2008, 6:14pm (report abuse)I have SMA type III and am still barely hanging on to my ability to walk at 40. We are so close. Please pass this bill now, America.
Kirstin Juhl
December 26, 2008, 9:04am (report abuse)I used to think that disabled people were normal people with disabilities. Now I know better. These are amazing people. I don't know if being born so disabled allows them to grow in a way that we "normal" people can, but these people are truly shining lights who are role models in spirit, bravery, and compassion. They give so much to society... they touch every person they meet and leave that person for the better... it's time to give back to them.
I am the auntie of one of these special kids, and if there is money for wall street, the auto unions, the billionaire auto CEOs, but none to save the lives of these kids, well, that's a society I am not sure I want to be a part of.
Joanne Browne
January 5, 2009, 5:45am (report abuse)Please help funding for sma, i lost my Son Seán at 9 months old he was the light of my life, i was told 9 weeks befo he passed away that he had sma and that there was nothing anybody could do to prevent it. Parents are supposed to be able to protect there children, but parents cant protect them form sma. He sits on my shoulder and looks after me everyday, ill never see him as a man. please dont let more mothers and fathers feel the pain us fellow parents have felt.
RSS Feeds for This Bill
Keep yourself updated on user contributions and debates about this bill! (Learn more about RSS.)
From the Blog
Seeking a Cure for SMA
Spinal Muscular Atrophy (SMA) is the term given to a number of different disorders with a common genetic cause. They manifest themselves in weakness due to loss of the motor neurons of the spinal cord and brain stem. Infantile SMA is the most...