Comments on: Seeking a Cure for SMA

By: Victoria Strong

Victoria Strong — Fri, 09 Jan 2009 06:59:18 +0000

This bill would benefit hundreds of diseases in the long run. Initially the SMA Treatment Acceleration Act focuses on SMA because they need to find that last missing piece of the puzzle. They know the gene responsible and why this happens, and now they just need to figure out how to change it. There are many clinical trial drugs that have already benefited diseases such as Lou Gehrig’s disease…when nothing else had previously worked. Because so much is known about SMA, scientists see the potential that a cure for SMA creates for millions of people suffering from other diseases.

By: Michele Erwin

Michele Erwin — Wed, 31 Dec 2008 16:22:39 +0000

This bill is important to me and family. I am a mother of a 2 year old boy who has SMA. Greyson is an adorable and charming little boy. But Like most children with SMA he can not sit, stand, crawl, or walk. Greyson will soon be recieving his first power chair. Like most children with SMA a cold can lead to complications.
Greyson needs constant care and meets with Ocupational therapists, speech specialiss, Physical therapists and doctors dailey. This is more then any child should endure.
In addition to Greyson’s needs, This illness comes with a cost to the parents, conversations about long term care, new home modifications or the purchase of a new home to accomodate all the needs for thier child. The fincially and emotional tole this puts on the parents. We need to find a cure. Our children need this bill.

By: Dorothy Gill

Dorothy Gill — Fri, 05 Dec 2008 20:20:33 +0000

Our grandson Owen Shuler passed away August 16th 2008 at five months of this horrible disease. He was dearly loved by our whole family and friends and affected so many others with his infectious smile. He put up a good fight and his parents Dorothy and Jon as all of us are truly devastated and want to keep the fight going to find a cure for SMA and will work ardently for the cause. Please pass this much needed bill for research.

By: Richard Rubenstein

Richard Rubenstein — Fri, 05 Dec 2008 19:39:21 +0000

The passing of these bills is important to everyone. My wife and I are parents to a beautiful 3 year old boy, Max, who is afflicted with the disease. Max is completely physically disabled and relies on us for all of his movements and positioning. Max and other children with this disease are extremely medically fragile. The common cold often becomes a life threatening condition. As a parent of an SMA child, I understand all too well the burdens the condition creates not only for the children and other parents but our society as a whole.

The medical costs relating to caring for an SMA child is staggering. Hospitalization is common place. Each child requires constant supervision of their parents and an army of health care workers. This army includes the pediatrician, pulmonologist, orthopedist, neurologist, physiatrist, 24 hour nursing, physical therapists, occupational therapists, speech therapists, and special education providers. Additionally, The care for SMA children requires specialized medical equipment, including ventilators, motorized power wheel chairs, standers, specialized seating and bedding, various braces, cough assist machines, pulse oximetry devices, suctioning devices, percussive vests, nebulizers, and gel mattresses. Often times the care for SMA children requires home modifications including lifts and elevators, ramps, and other modifications to make the home accessible including widening doorways, installing lifts and modifying bathrooms.
Obviously, the cost of all of this care is more then any family could afford and a heavy tax is levied on insurers and government agencies providing subsidies.

Finding support for a cure could lead to eliminating all of these burdens. More importantly finding a cure would provide the miracle all of the parents and our children hope and prey for on a daily basis. Until then we can only dream of the day our children can give up their ventilators and power chairs, and free themselves from the internment of their beds and take their first steps.

By: Jackie Sporbert

Jackie Sporbert — Fri, 05 Dec 2008 08:06:42 +0000

These bills should absolutely be passed. Proper research and funding, as well as public recognition are the keys to finding a cure for this disease.

By: Diane Muoio

Diane Muoio — Fri, 05 Dec 2008 03:04:55 +0000

If recognition is not given to this dibiiating disease then there will never be any kind of future for those afflicted. I fully support continued research and development to find a cure and/or treatment for this disease and to give families hope for their children’s future. We must explore all avenues of therapy and find the funding for programs which will enhance the clinical aspects of research. Don’t give up because you will be doing a disservice to those afflicted and their families who rely on your help.

By: Dorothy Shuler

Dorothy Shuler — Fri, 05 Dec 2008 02:45:36 +0000

I am Owen’s mama and honored that he was mentioned in this blog along with his long-distance girlfriend Gwendolyn. I had never heard of SMA before Owen was diagnosed on May 5. We need to make noise about this devastating disease. The fact that researchers are close to a cure and are under funded is simply unacceptable, in any economic climate. Please pass this bill. It is too late for Owen, but it isn’t for Gwendolyn and all the other children living with this horrible disease.

By: Karen Shiesley

Karen Shiesley — Fri, 05 Dec 2008 00:34:13 +0000

My grandson is afflicted with this horrible disease and I pray every day that a cure or treatment is found. I do believe we are close to a cure for this genetic disease and this cure will lead to a cure for many other related and similar diseases.

By: erika

erika — Thu, 04 Dec 2008 23:04:51 +0000

I think the bill should be supported because there are more and more of our children being diagnosed with this fatal disease and it’s time for the families and the children to get the support they desperately deserve and need. Thank you.

By: Debbie Cuevas

Debbie Cuevas — Thu, 04 Dec 2008 22:33:22 +0000

This legislation is extremely important to the SMA kids. I am mom to Dylan who has SMA and Heather who is SMA free. My son relies on us for all physical aspects of his life. SMA kids are over the top intelligent and are sadly trapped in the wrong physical body. I run a Chapter in NY of Families of SMA and every family I meet is more dedicated than the next. We need to have National recognition of this disease. It is important for the lives of the children and adults with SMA.