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S. 2042, The SMA Treatment Acceleration Act
- This item is from the 110th Congress (2007-2008) and is no longer current.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.
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Visitor Comments 
Mom of SMA Child
December 28, 2007, 11:07pm (report abuse)SMA is a horrible disease. It is the #1 genetic killer of children under 2. 1-6000 are born with it. The research has found the gene that causes it, understanding of the gene, and identified treatment paths. Further study is needed. Up until now almost all funding is from non-govt means. Please support this bill.
Beverly Harris
September 17, 2008, 9:26pm (report abuse)Please pass this bill S2042. My grandson has type III SMA. nO FAMILY SHOULD HAVE TO LOSE A CHILD TO A DISEASE THAT IS VERY CLOSE TO BEING TREATABLE OR CURED.rf
Mark Harris
September 17, 2008, 10:01pm (report abuse)I can't imagine who would vote against this or why. My son has SMA Type 3 and we need a cure. The research that this bill will fund will not only help those with SMA but numerous other diseases.
Del Harris
September 20, 2008, 9:24am (report abuse)SUPPORT THIS BILL! THERE IS NO REASON WHATSOEVER NOT TO.
Victoria Strong
November 10, 2008, 3:44am (report abuse)I am the mother of a darling baby with SMA. SMA is the #1 genetic killer of infants. In fact, 1 in 40 people are carriers of the gene responsible for this horrible disease. Gwendolyn loves reading and singing and playing peek-a-boo, just like any one year old. But, Gwendolyn can not sit up, eat by mouth, or breathe unassisted. Yet, she smiles through it all. Researchers believe a treatment is just around the corner. Please, pass this important legislation and give the thousands of children with SMA the future they so deserve.
William R. Withey
November 10, 2008, 4:52am (report abuse)I have a beautiful one-year-old granddaughter with SMA Type I. According to researchers this disease is closer to a cure than any other disease of this type. A cure found here will provide a roadmap to curing many related diseases. If billions can be spent on elections, let's see some good coming out of them.
Kristen Carter
November 10, 2008, 12:48pm (report abuse)Gwendolyn Strong is my niece and she has type 1 SMA. It is not okay that there is enough information available right now that a cure could be closer for SMA than any other disease of this kind and yet the government may not act on this bill. Give life, give hope and give time to all people with SMA and stop the hurting families suffer at the hands of this disease. Pass this legislation now, please...for Gwendolyn.
Ellen Strong
November 10, 2008, 12:48pm (report abuse)I am the grandmother of Gwwendolyn who is one year old and was diaagnosed with SMA Type I at six months of age. Because of the outstanding care given to her by her parents and the SMA team at Stanford, she is, though totally paralized, a smiling, loving baby. She requires 24 hour a day care. There is currently no hope at all regarding this horrendous genetic disease. Please pass this important legislation immediately so that all families caring for children with SMA of any type and so that the children too may have hope for the future. Can you imagine living with NO HOPE whatsoever. Currently, because we have not found a cure, but are so close to finding one, thousands live with NO HOPE whatsoever but these children and their families continue to fight one more day of LIFE. Please, please, I beg you, please pass this legislation.
Maureen Gill
November 10, 2008, 1:56pm (report abuse)My beautiful nephew Owen Shuler lost his brave fight to SMA at only 5 months old. I will never forget the day I sat in the doctors office and was told that there is no treatment and a short lifespan. I still get nauseous thinking about. The fact that my little sister and brother in law had to bury their baby is so unacceptable and unnatural. Crisis is a word that has been used for the ecomony, but the real crisis is that babies are dying and families are forever broken. It is not to say that this bill SHOULD be past, it MUST be past.
Dorothy Shuler
November 10, 2008, 3:00pm (report abuse)My precious son Owen Vincent Shuler lost his courageous battle to SMA Type 1 at only 5 months old. Imagine bringing home your beautiful, seemingly healthy newborn from the hospital, to find out 2 months later that your little baby has a genetic TERMINAL illness with NO TREATMENT, and NO CURE. SMA is so disgustingly horrible, it robs you of everything. Owen spent 34 days in Pediatric ICU. Owen could never move his head, arms or legs, and at the end he was fed through a G-Tube and needed breathing assistance 24 hours a day. SMA families are hopeless and helpless but it doesn't have to be that way forever. Researchers are so close to a cure, they just need proper funding. Imagine if it were your son or daughter, niece or nephew, grandchild - would you let money stand in the way of their life?
Chassity Bennett
November 10, 2008, 3:24pm (report abuse)You need to pass this now! Put Owen, Gwendolyn, and Avery in your hearts.
Gail Lundy
November 10, 2008, 3:44pm (report abuse)If there is money to bail out Wall Street there MUST be money to "bail out" these children and their families!!
Florence Visalli
November 10, 2008, 3:54pm (report abuse)Help these families and please help them now.
Kerri Alessi
November 10, 2008, 3:55pm (report abuse)Every child deserves a chance at life. It is too late for my nephew, Owen Shuler, who lost his battle to SMA Type 1 at 5 months old, but it is not too late for all of the other children affected by SMA. Please fund efforts to cure this horrible disease.
Allyson Dwyer
November 10, 2008, 4:09pm (report abuse)What I want to know is who are these heartless disgusting people making up the 22% that have currently voted against this bill? They have obviously never lost a child, nephew, niece, grandchild or cousin to a devastating disease like SMA.
Bill Strong
November 10, 2008, 4:33pm (report abuse)My daughter Gwendolyn was born perfectly healthy in October 2007 and diagnosed with SMA Type 1 at 6 months old. Her mind and spirit are no different from any other healthy baby, but her body is failing her. There is currently no treatment and no cure for SMA, but there is HOPE. Those impacted by this horrible disease have accomplished so much on friends and family funded research in light of unbelievable circumstances. Passage of this legislation will provide the organization and funding to allow researchers to make that last step in finding a treatment and/or cure for SMA which, in turn, will provide a wealth of downstream knowledge toward treatments of other diseases such as ALS, Alzheimer's, and many more. Our petition, PetitionToCureSMA.com, has collected nearly 25,000 signatures in support of the passage of this legislation. Please pay attention and pass this bill so that no more innocent, bright, vibrant children are lost to SMA.
Elizabeth Vandiver
November 10, 2008, 5:09pm (report abuse)PLEASE PASS bi-partisan S.2042 The SMA (Spinal Muscular Atrophy) Accelerated Treatment Act. SMA is the #1 genetic killer of infants under the age of 2 years old and 1 out of 40 people are genetic carriers. My niece, Gwendolyn Strong, was diagnosed with SMA Type 1 in April. This is a devastating and paralyzing disease. Mentally she is very bright and wants to play. Physically, she eats with a feeding tube, she can't swallow and thus has to be suctioned constantly, she can't hold her head up, she can't sit (although she wants to and is frustrated by that), and she is paralyzed in all but her arms (some SMA babies can't move their arms). Her parents give her round the clock care along with a night nurse. Cognitively she developing mentally like any other 1 year old baby. She endures a lot and does it all with a smile. Despite her disease she really enjoys what she can. With a cure she could live a long healthy life. Make a difference and save lives! Vote YES on S.2042.
Julie Brennan
November 10, 2008, 6:49pm (report abuse)The SMA Acceleration Act will bring life and joy to so many thousands of people (families and those afflicted) who are bravely suffering an intolerable, inhumane life. What could be worse than loving and nurturing your child, knowing that her days are numbered. One incredible family is documenting the journey so beautifully, and if you want to understand it better, go to www.gwendolynstrong.com These are 3 Strong Soldiers who are making a difference, and needing your help (quickly!)to complete the cure.
Lauren Lundy O'Connor
November 10, 2008, 10:23pm (report abuse)SMA not only takes the lives of the children who have SMA, it takes the hearts and souls from their families and friends. Watching my little buddy Owen Shuler and his family battle this awful disease is enough pain for any human being to endure for a lifetime. While a cure will not bring Owen back it will help save others from the hell families like the Shulers have gone through. Please help us get this disease!
Donna Taylor
November 11, 2008, 12:19am (report abuse)Like so many suffering families, I too lost my daughter, Hannah Jean Campbell, to SMA. She was nine months old to the day. What happened to my daughter was the most horrible set of events I have ever experienced. I had to watch my daughter stop breathing in her own bed. Please help us help our children and allow us to dream of a future as a loving family, because not only do I have to relive my pain when I think of my daughter's struggles, I also have to constantly think about the fact that our next baby would have a 1 in 4 chance of having SMA as well. Please take the time to read about SMA and the children that it affects, you would then have no doubt that there needs to be a cure as humanly possible.
STEPHANIE TAYLOR
November 11, 2008, 1:18am (report abuse)I AM AN AUNT OF A BEAUTIFUL SMA ANGEL WHO HAS GONE HOME TO GOD. HANNAH JEAN CAMPBELL DIES AT NIN3 MONTHS YOUNGE ON THE EXACT DAY OF HER BIRTHDAY! DO TO THE HORRIBLE DISEASE I DIDN'T GET TO SPEND MUCH TIME TO GET TO KNOW OUR HANNAH AT LEAST NOT AS MUCH AS I WANTED TO! SHE STRUGGLED DAY IN AND DAY OUT, WE NEED TO GET THE CURE TO THIS HORRIBLE DIESES AND STOP THE STRUGGLES OF THE INNOCENT BABIES EVERYWHERE!!! THANK GOD HANNAH CAMPBELL HAD THE STROGEST, BRAVEST PARENTS EVER, THEY ARE MY HEROS: DONNA TAYLOR AND MATT CAMPBELL!! YOU ALL ARE IN MY PRAYERS.. NOW LETS GET THE WORD OUT PEOPLE A LOT OF PEOPLE ARE UNAWARE OF THIS AWFUL DISEASE! REST IN PEACE PREETY BABY HANNAH!!! ALWAYS REMEMBERED & NEVER FORGOTTEN!
vincent gill
November 11, 2008, 6:31am (report abuse)We lost our grandson Owen to this killer our lives will never be the same.He was 5 months old and was taken from our entire family. this bill must be passed now
Jamie Horvath
November 11, 2008, 9:25am (report abuse)I never had the pleasure of meeting Hannah because god called her home way to early. Matt and donna are true heros to me because I couldnt ever see myself going through what they had to. They need to pass this bill so families dont have to go through this pain anymore.
Lee Tanzey Scott
November 11, 2008, 10:52am (report abuse)I am Gwendolyns great Aunt. She is the most beautiful baby I have ever seen and through it all she smiles. Her strength is amazing. Few have it. Many never get to see this kind of love and devotion. Her parents Bill & Victoria are doing a 'stellar' job, but it is not easy. Her smile can melt a glacier and her eyes say a million words. Please help!
Stacey Shih
November 11, 2008, 1:30pm (report abuse)Please pass the bill S.2042 and save the life of all SMA children. My 20 months old son Eric has SMA type I/II, a disease that we have never heard of, and the worst thing for the parent is to know that there's currently no treatment/cure for SMA. SMA does not affect intelligence, but takes away their ability to move and breath. Because of this terrible disease, they are trapped in their own body. Please keep our hope alive by passing this bill and finding the cure.
Mieke Verstraete
November 11, 2008, 4:24pm (report abuse)Our little Elias is a brave little boy of three who can walk only a few steps and has to watch the other children play. I am sure medical science will find a cure, but we need it so badly. Please help with the right legislation
Emma Mccarthy
November 13, 2008, 2:47am (report abuse)We lost our son Callum, to sma type 1 nearly 11 years ago now, he died at just 12 days old. We now have Twin Daughters, Both sma carriers. I hope VEry much, that a cure is found, so people dont have to go through the pain, of seeing their child die from sma.Please, keep passing this bill on, to help.
Brittany Marks
November 13, 2008, 8:01am (report abuse)We lost my nephew, Jacobsen, to Type 1 SMA. He died at 4 months old. It was a devastating loss for the entire family. Now, we have another beautiful baby boy, hodges, who has been diagnosed with SMA as well. Please pass this bill so that these babies have a chance!
Lisa Pauling
November 13, 2008, 2:58pm (report abuse)I lost my niece Leah to SMA at age 18 months. She was a true angel and would have changed the world if she had the time on this earth. Please pass this bill, no family should have to see their children go through this disease.
Jeff Horton
November 13, 2008, 5:38pm (report abuse)My two year old daughter has Type 2 SMA. She is very weak and cannot stand, walk or crawl. Please help her find a cure. This is the number one genetic killer of CHILDREN UNDER 2. This Bill could save many lives.
lesley winnard
November 13, 2008, 6:34pm (report abuse)Breaks my heart to think of these little ones....On a personal note God bless you Shannon, you are in our thoughts always x
Rosann Kraft
November 14, 2008, 12:45am (report abuse)I am the aunt of twin boys with SMA. It is time to help them as well as other children affected by this condition. We CANNOT let another day go by and do nothing. NOW is the time to help these innocent children and their families.
Tina Schwager
November 14, 2008, 12:06pm (report abuse)It is unfathomable that our country can spend so much fighting other people's and country's fights, yet won't spend what it takes to fight for children. Gwendolyn is our neighbor's niece, and we have seen the toll this disease has taken on them and their family. We have to stand up for the kids and the medical community that can figure out how to help them. Please support this bill for all the kids.
Kim Lerner
November 14, 2008, 7:06pm (report abuse)My son Zeke is 8 years old and has SMA type 2. This disease is so close to having a cure. This advance has been made by the money we have raised as SMA families. It's time for YOU to help us. If we even had a fraction of what you just gave Wall Steet maybe my son could walk.
amanda
November 15, 2008, 3:23am (report abuse)i am from australia, and my best friends beautiful little man, beau jonathan coogan (5 months) has SMA type 1. Beau is so sweet and precious and is the love of his parents lives. They do not want to, and SHOULD NOT lose him! This is heartbreaking for everyone involved, none more-so then his beautiful parents Elizabeth and Thomas. Something needs to be done, this disease is so unfair and cruel. No family, or innocent little baby should go through this. PASS THE BILL.
Elizabeth
November 15, 2008, 7:02am (report abuse)My beautiful 5-month-old son Beau has SMA type 1 and we have been told that we will be very lucky to get 2 years with him. Please, please help us! Maybe if it has never effected you it does not seem real but it is! Follow this link to see photo's of my angel Beau and see how real it is. http://www.facebook.com/album.php?aid=60640&l=c41ed&id=580685983
lisa martin
November 15, 2008, 5:51pm (report abuse)Please pass this legislature ASAP. Sweet, and innocent children, like Gwendolyn need this help to find a cure.
Kathy Bosevski
November 16, 2008, 6:21pm (report abuse)Our beautiful little angel Alexandra Bosevski passed away in Sept 06 at 11 months from SMA Type 1. She suffered so so so very much and as hard as it is dealing with not having your little baby around anymore the filme reel that plays in our head everyday of the horrible suffering she went through will forever rip my heart apart. PLEASE help as when our child was diagnosed we had nowhere to turn to regarding answers for the future. PLEASE HELP ... these are our babies!!!!!!!!!!
Laura Johnson
November 17, 2008, 3:52pm (report abuse)I have 2 wonderful daughters, my oldest one is 16 and has SMA II, her healthcare has hit over 2 million year to date. I am fortunate as I still have health insurance and a job. Imagine if just one child costs our healthcare industry so much? We need to cure SMA and all diseases that link with it. PLEASE HELP.
Seattle, WA
Mara Moore
November 17, 2008, 5:06pm (report abuse)You must Pass this bill!! I have seen one of my darest friends and her family suffer the loss of their 5 month old son. I ask that you do some thing. There is a great saying in this world no one person can do everything but togehter we can all do something. Lets make a diffrence and pass this bill for SMA, it could change the world we live in the lives we share and the people we are.
mary ellen spink
November 17, 2008, 6:53pm (report abuse)to Cathy Mc Morris, Our family carries the gene for SMA we have had one grandson die from it. If ther is a cure please vote to fund necessary research to help the familes of the SMA babies.
Mommy of an SMA Angel
November 17, 2008, 9:53pm (report abuse)Help fight SMA...I will never be able to hold my sweet precious child in my arms ever again because of Spinal Muscular Atrophy. Something has to be done b/c no child should ever have to endure the kind of pain they do with SMA. Help Fight SMA in Memory of my SMILING ANGEL, Francisco Rodriguez, Jr., SMA angels on Earth and in Heaven
Susan Anderson
November 17, 2008, 9:56pm (report abuse)My son Roman is SMA type 1 and 18 months old. Please keep the hope alive for my son and his friends and help get this bill passed!
Dawn Bundy
November 18, 2008, 10:10am (report abuse)This bill is a step forward in not only research but awareness for SMA. So many parents are fighting this unknown disease. My son Aiden SMA type1 21 months has to fight everyday just to breathe.
Cindy Hall
November 18, 2008, 10:41am (report abuse)Please pass the SMA Acceleration Act --we have a grandchild, Aiden Bundy with SMA. No child should have to experience what he does on a daily basis just to breathe. Please check out his site http://www.caringbridge.org/visit/aidenbundy Thanks for supporting this Act !!!
David Hall
November 18, 2008, 10:44am (report abuse)Please pass the SMA Acceleration Act. Many children are counting on you. My grandchild, Aiden Bundy has SMA type 1. Thank you so much.
Carolyn Fuller
November 18, 2008, 10:47am (report abuse)We desperately need you to pass the SMA Acceleration ACT. My great-grandchild Aiden Bundy suffers from SMA type 1. Please help us find a cure !
Doug Burbank
November 18, 2008, 10:48am (report abuse)Help us find a cure for SMA--pass the SMA Acceleration ACT
Steve Danley
November 18, 2008, 10:50am (report abuse)Pass the SMA Acceleration ACT --keep hope alive for the kids who suffer from this disease.
Michael Danley
November 18, 2008, 10:51am (report abuse)Pass the SMA bill--lots of folks are counting on you to help find a cure for this disease.
janice coogan
November 18, 2008, 5:13pm (report abuse)Perhaps this bill is the answer to our prayers for our darling baby Beau Jonathon Coogan. We can't give him back, he's too precious and such a special gift. Please pass this bill.
Aunty Amy
November 18, 2008, 9:05pm (report abuse)This disease is too sheltered, not enough people are aware of it. My Nephew Beau is the light of my world. He has been diagnosed with SMA Type 1. This is a disease that needs special attention. It is the leading genetic killer of children under two. Our children are so precious. They should be given priority. This disease needs special priority. So many families are affected by it. Before Beau came into our lives, we had never even heard of it. But now, there are just so many people out there who have contacted my sister who have gone through the same thing! We need to all work together and try to find the answers we so desperatly seek. So please, pass this bill. Help to give hope and love and joy back to so many families.
We need our angels. And no, we DONT want to give our Beau back, until he has gotten to experience all the wonderful things that life has to offer!
Take notice, and do the right thing!
Belinda Trow
November 18, 2008, 9:14pm (report abuse)Please pass this bill. Don't let anymore babies be lost to this disease
Jenny
November 18, 2008, 11:05pm (report abuse)How could anyone NOT be in favor of eliminating the #1 genetic/terminal illness of children under the age of 2?
Bree
November 19, 2008, 1:39am (report abuse)This illness is very heartbreaking, children all around the world are dying from it every year. If there is a cure for it, it should be put to use. I myself have 2 children and can not imagine what these families are going through. I know a brave lil boy named beau who is battling sma now and he deserves a long, fun filled life. And his parents deserve to have him and not have to go through the heart ache they are every day!
Danielle
November 19, 2008, 2:32am (report abuse)This is a cruel death and if a cure can be found to prevent it then we HAVE to fund it!
Jodie
November 19, 2008, 2:35am (report abuse)Our children are so precious and this disease is heartbreaking for everyone concerned.
I can't see why people wouldn't be in favour of this bill.
Ruth Martin
November 19, 2008, 3:10am (report abuse)If anyone has the power and resources to further studies in to SMA, the number 1 killer of children under 2, it is the US. Why is this bill up for debate?
Justine Buckpitt
November 19, 2008, 3:22am (report abuse)Please pass this bill and help so many families which face this horrible disease,especially little Beau Coogan.
Please Help
Caroline Birchall
November 19, 2008, 3:46am (report abuse)Please pass this bill. It will help so many sick children. Please don't let naymore die form this awful disease
Tammie (Australia)
November 19, 2008, 4:05am (report abuse)Please pass this bill for little Beau in Australia he needs your help we beg you to pass it for all children with SMA
Lorraine Robertson (Australia)
November 19, 2008, 4:23am (report abuse)please pass this bill and assist the many ill children with SMA and their families. To lose a child is devastating but to lose a child which could have been prevented would be worse.
Raelene Cochrane
November 19, 2008, 4:39am (report abuse)I have a child with sma type 2. to have reserch on sma would enable my bright beautiful son to hopefully walk one day. My mother had many miscarriages and so did aunty on my dads side died from sids. To have more research put into spinal muscualar atrophy would mean wonders to myself,my family and my cousins. It affects all of us.
ray slater
November 19, 2008, 4:45am (report abuse)This is such an important subject, they have to pass this bill...
If it is passed and saves one family from the lifelong trauma of losing a child, it is worth it.
Kirsten
November 19, 2008, 5:49am (report abuse)I have been reading updates on a little fighter named Beau, His story breaks my heart as I have a 7 year old and couldnt imagine what Beau and his family are really going though!! I would love to see this Bill passed for Beau and all the other little fighters out there. Lets give these little ones a chance!!!!
Karen Field
November 19, 2008, 6:03am (report abuse)It is inconceivable that it has become an issue at all. The impact of SMA is in the least devastating and heartbreaking to all concerned. My heart and love goes out to you Thomas & Elizabeth and your beautiful boy Beau.
Caroline Condliffe
November 19, 2008, 6:06am (report abuse)Please pass this bill for all the little one's with sma,especially Beau Jonathon Coogan, who is a precious little angel.
roger shean
November 19, 2008, 6:11am (report abuse)i personally dont know anyone with this disease but i have a 2.5week old girl and cant imagine how life would be with out her i'm supporting this bill
Narelle Lethlean
November 19, 2008, 6:12am (report abuse)I am so inspired by the faith of Liz and Tom Coogan as they fight for their adorable little firstborn son Beau. I have three children myself and they are all worth fighting for. PLEASE! If there is something that you can do, what are we waiting for?
Sharlina
November 19, 2008, 8:47am (report abuse)I am praying for friends who have a son, Beau, with SMA. As a parent myself i can only imagine what parents of SMA children are going through. They should not have to go through this and neither should their precious SMA darlings. Please pass this bill. Our children are our future, they have no voice and we need to speak out for them.
marc thomas/germany
November 19, 2008, 4:19pm (report abuse)This is the time, our time to handle the future. so please, with all this change these times, pass this bill.
we can!
Renee Walsh
November 19, 2008, 4:29pm (report abuse)I don't understand why this bill hasn't been passed already. SMA is the number genetic killer of children under 2. How many children and families have to suffer before we do something about it??
Abby Morphett
November 19, 2008, 4:47pm (report abuse)It brings tears to my eyes to read these comments. My Beautiful friend Ami, Newphew has SMA type 1. It brakes my heart to see what this does to the most caring and loving family in the world. PLEASE PLEASE Pass this Bill....
Nadine
November 19, 2008, 4:54pm (report abuse)Why has this not already been passed?!?! It is so heart breaking to hear all the stories above from all the families who suffer everyday. Im praying for beau and his family! Pretty please pass this bill!!!
Aimee
November 19, 2008, 5:10pm (report abuse)Its amazing how citizens have to beg their governments for medical help for our children when we reflect on how they spend their military budget-blown out year after year. This BILL cant be ignored, for families affected by SMA, my prayers are for you...PASS THE BILL, this one really does matter!! (xxLizxxTomxxBeauxx)
(carie) bentleysmommy
November 19, 2008, 5:30pm (report abuse)please pass this bill. i had a son with sma. i would love if these precious kids wouldnt have to suffer any more.
Stella
November 19, 2008, 5:43pm (report abuse)My daughter Lilly has SMA Type 1. I use to say that losing a child would be a parents worse nightmare and now I am living that exact nightmare. Please pass with bill as it may be the answer to all our prayers for our gorgeous little girl and so many other beautiful children out there.
Praying for Lilly & Beau xx
Christina
November 19, 2008, 6:28pm (report abuse)Please pass this Bill. I can only imagine what parents would be going through.
My prayers are with you Lilly xx
Miss Johnson
November 19, 2008, 6:38pm (report abuse)This needs to happen!
I say this on behalf of all those poor suffering children out there and the grief their families are experiencing
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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...