Home

Blog

H.R. 3334, The SMA Treatment Acceleration Act (39 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  • This item is from the 110th Congress (2007-2008) and is no longer current.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.

H.R. 3334 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.

(read more ↓)

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...

Visitor Comments Comments Feed for This Bill

Jamie Saville

August 20, 2007, 1:00pm (report abuse)

I urge you to support H.R. 3334: The SMA Treatment Acceleration Act. I understand there are choices to be made with regard to the federal budget. As a taxpayer and voter, my choice to support the SMA acceleration act, an effort aimed at saving the lives of brilliant, and delightful children like my niece, Morgan Saville. I hope you will represent my choice when it comes time to vote.

John Cobb

February 17, 2008, 12:13pm (report abuse)

Please support H.R. 3334. Until recently I knew nothing about SMA but it takes only a short time to learn action needs to be taken. No family can afford care for a loved one with SMA without government assistance. Also there is a much greater chance someone you know may carry this gene which is carried by 1 in 40. This bill allows there to be a coordinated attack that will benefit everyone.

Beverly Harris

September 18, 2008, 1:22am (report abuse)

Please support this bill. No family should have to lose their child to a disease that is close to being treatable or curable with more funding. My grandson has type III SMA.

Mark Harris

September 18, 2008, 2:04am (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.

Lucy Walker

September 19, 2008, 2:06am (report abuse)

I urge you to support this bill for SMA TYPE III. There needs to be research for this illness to cure children with illness.

Del Harris

September 20, 2008, 1:21pm (report abuse)

SUPPORT THIS BILL! THERE IS NO REASON WHATSOEVER NOT TO.

William R. Withey

November 10, 2008, 9:55am (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, 5:50pm (report abuse)

Please pass HR 3334 for Gwendolyn and others like her fighting to breathe, move and live with SMA. We are so close to a cure and there just is no reason not to pass this!

Ellen Strong

November 10, 2008, 5:56pm (report abuse)

My precious granddaughter was diagnosed with SMA Type I at six months of age. Miracuously, through the wonderful care given to her 24 hours a day by her parents and with the wonderful assistance of the SMA team at Stanford University, she is now one year old, though totally paralized. The stress this disease places on the families of these children is overwhelming. Currently there is no hope for any of the thousands of infants, children and young adults suffering from this horrendous disease. We are very close to finding a cure, though, and therefore this legislation needs to be passed so that the cure can be found as quickly as possible. A cure will lead to cures for other genetic diseases as well. I beg you to please support this important legislation. It would mean so very much to so many, many people. Have a heart and support the SMA Acceleration Act now.

Dorothy Shuler

November 10, 2008, 8:44pm (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?

Gail Lundy

November 10, 2008, 8:47pm (report abuse)

If there is money to bail out Wall Street there MUST be money to bail out these children and their fanilies!!.

Florence Visalli

November 10, 2008, 8:55pm (report abuse)

There's money....of course there is! Put it where it really counts...these families.

Bill Strong

November 10, 2008, 9:36pm (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.

Jackie Hurley

November 10, 2008, 10:05pm (report abuse)

I am not sure how anybody would vote AGAINST this bill - but if somebody is thinking of voting against it, before you do, why not call a parent who has a child with SMA or who has lost a child, do you have the guts to do that???

I hope you do because you would not be able to vote against this bill. YOU NEED TO PASS THIS BILL!

Elizabeth Vandiver

November 10, 2008, 10:15pm (report abuse)

PLEASE PASS bi-partisan HR. 3334 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 HR.3334

Jim Biolsi

November 10, 2008, 11:35pm (report abuse)

This Bill is really needed. There are so many families affected by this terrible ( currently ) uncurable disease. What a tragedy!

Julie Brennan

November 10, 2008, 11:53pm (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 11, 2008, 3:27am (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, 5:22am (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.

Maureen Gill

November 11, 2008, 8:40am (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. To learn more about SMA and the families affected please visit; www.fightforowen.com and gwendolynstrong.com.

tracy

November 11, 2008, 1:49pm (report abuse)

I really don't understand how someone cannot vote for this bill. Come on people let's get this passed.

Lee Tanzey Scott

November 11, 2008, 4:03pm (report abuse)

My great niece Gwendolyn is one year old and living with SMA '1' She is doing OK but it is a constant 24/7 battle to keep her going. Please pass the HR 3334 bill.  She is so precious and deserves nothing but the  best. 

If love could cure this disease she would be cured already, but......please pass this bill!  

Stacey Shih

November 11, 2008, 6:40pm (report abuse)

Please pass SMA Treatment Acceleration Act and help to find a cure for all SMA children. This will also lead to find treatment for other neuromuscular diseases. If we can afford to give AIG and other failing banks billions of dollar, we should be able to fund money to find treatments to help our own children - They are our future.

Mieke Verstraete

November 11, 2008, 9:30pm (report abuse)

It is unthinkable that one wouldn't vote in favour of an Act that can promote finding a cure not only for these innocent children wh have SMA, but for so many other neurological diseases. Please be human, do the right thing to accelerate finding the cure. Scientists are getting near to the solution.

JMC

November 12, 2008, 7:14am (report abuse)

Absolutely agreed!

TT

November 12, 2008, 10:40am (report abuse)

I wish the human beings to discharge the obligation to rescue someone in need. Please take action to vote for the Bill.

Jeff Horton

November 13, 2008, 10:44pm (report abuse)

Please, please, please pass this Bill. The families of these children are desperate for help. My daughter has Type 2 SMA, she is smart and loves life but is very, very weak. Passing this bill could help us find a cure for SMA and save many children's lives. Thank you.

Rosann Kraft

November 14, 2008, 5:49am (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.

Beth Haines

November 14, 2008, 1:28pm (report abuse)

Please support this bill! It is time to make a difference and help these families with SMA. These children deserve a cure. Save a life!!

Tina Schwager

November 14, 2008, 5:07pm (report abuse)

Gwendolyn and all the other kids who are helpless to make changes need our help. Please pass this bill and give these amazing fighters the fighting chance they deserve.

Kim Lerner

November 15, 2008, 12:13am (report abuse)

My son Zeke is 8 years old and has SMA type 2. According to the experts, a cure for this disease is within reach. It is time for YOU to help us. If we had a fraction of the support you just gave in the bailout for Wall Street, then maybe my son's dream of walking could be fulfilled.

rick jones

November 17, 2008, 8:36pm (report abuse)

Please, take a moment to learn about SMA.Once you understand this awful disease you will feel compelled to support the legislation. It would unthinkable to know, and not act.

Christa

November 17, 2008, 10:29pm (report abuse)

We lost my sweet little nephew, Truman, when he was only 4 months old. He had SMA type 1. Before Truman was diagnosed, I had never heard of SMA, and when I learned more about it, it shocked me that it was so unknown to the general public. SMA is a terrible disease -

watching this sweet, vibrant child trapped inside a body that is degenerating every day is the most devastating thing I've been through in my life - and I can't even imagine what my sister and brother-in-law experienced losing their baby. Our family will never be the same, and there are thousands out there just like us. Researchers are so close to a cure, there is no reason children should continue to suffer. Please vote to pass this bill.

Mark

November 17, 2008, 11:47pm (report abuse)

Vote for life; vote for H.R. 3334

Mommy of a SMA Angel...Angela L. Rodriguez

November 18, 2008, 3:03am (report abuse)

I am a mother of a precious child and Heaven and if it wasn't for Spinal Muscular Atrophy I would still be able to hold my baby boy in my arms and watch him grow up to be a handsome young man. I will never have the chance to hold him in my arms again, feed him, watch him graduate, see him get married and have kids because SMA took that all away from our family. My son is now SMA free but no child should ever have to endure the type of pain that a child with SMA has to go through and no parent should ever have to watch their child suffer! I should be able to wake up next to my sweet child and see his beautiful smile. Please support the bill. It will not only make many dreams come true but will SAVE LIVES!!!! In Memory of my Smiling Angel Francisco, Jr.

Dawn Bundy

November 18, 2008, 3:12pm (report abuse)

A vote for the SMA Acceleration Act could have thousands of lives.

mother to Aiden, Sma type 1 21 months.

Marilyn Craig

November 19, 2008, 4:16am (report abuse)

Please vote for H.R. 3334. This is a devasting disease for the child and his/her family. Care is 24/7 and the helplessness a parent must feel to know that there is no cure. I have a friend whose granddaughter has SMA Type 1. SMA patients need RESEARCH, RESEARCH, and more RESEARCH.

Pennie Adams

November 21, 2008, 5:47am (report abuse)

Three months ago my oldest daughter was diagnosed with SMA after a year of tests. A month later her younger sister was diagnosed as well. Everyday I struggle with the fact that their lives could be cut short by no doing of their own. We need to pass this bill yesterday, ten years ago, twenty. A cure can't come soon enough. All they need is more funds. This could be the start of making this disease more mainstream. More children are living with this around the world than we know. Pass the bill and find a cure.

chad vandiver

December 2, 2008, 4:43am (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.

RSS Feeds for This Bill

Keep yourself updated on user contributions and debates about this bill! (Learn more about RSS.)