News

Local family to meet with Congressional Representatives at National Spinal Muscular Atrophy Research
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Congressman Eric Cantor with Andrew Creighton of Mechanicsville.





Published: April 24, 2007
Contributed Report

An area family is traveling to the nation’s capital to advance the fight against the deadly disease spinal muscular atrophy (SMA).  Wayne & Carice Smith of Mechanicsville will be meeting with Congressman Eric Cantor and Senators, John Warner and Jim Webb while attending the twelfth annual FightSMA national conference, “The Good Fight.” 
Spinal muscular atrophy is an incurable neuromuscular disorder that kills more infants than any other genetic disease.  Smith’s son, Andrew Creighton, age 14 has been diagnosed with the disease.  Spinal muscular atrophy affects the motor neurons of the spinal cord and brain stem, rendering them unable to communicate with muscle cells properly.  It is estimated that it occurs in as many as one in 6,000 births.  The National Institute of Neurological Disease and Strokes (NINDS) of the National Institutes of Health (NIH) states, however, that out of the 600 disorders it tracks, SMA is one of the closest to being cured.  FightSMA is an international nonprofit organization dedicated to accelerating that cure.
The Smith family and others from across the country will meet with their Senators and Representatives to urge them to support the creation of the first ever spinal muscular atrophy legislation. 
The proposed SMA Treatment Acceleration Act would establish a national clinical trials network to develop treatments that are safe and effective for SMA patients
“The conference attendees are able to explain better than anyone why the fight against spinal muscular atrophy is so critical,” said FightSMA President Martha Slay.  “We know these very important meetings with members of Congress will help to put a face on this horrible disease.“
Attendees will also have the opportunity to receive updates on research into the disease from scientists from all over the world, gain valuable and practical advice from clinicians for coping with a childhood disease on a daily basis.
For more information on the conference, please visit the FightSMA conference web page, at http://www.fightsma.org/index.php?annual_meeting_2007
About FightSMA
Headquartered in Richmond, Virginia, FightSMA (also known as Andrew’s Buddies) is an international nonprofit group dedicated to accelerating research for a treatment or a cure for spinal muscular atrophy (SMA), a neuromuscular disorder that kills more babies than any other genetic disease. 
For more information on spinal muscular atrophy and FightSMA, please visit http://www.fightsma.org
The latest SMA news and research information is available at the Spinal Muscular Atrophy Blog, at http://www.fightsma/blog.


Reader Comments

I am sure Andrew appreciates the attention. But maybe everyone should look at Cantor’s record on Healthcare before making a decision on this grand Photo Op! Eric Cantor and notice I didn’t use the word Honorable, has recently voted NO on the following bills:

To provide for the implementation of the recommendations of the National Commission on Terrorist Attacks Upon the United States.
Bill # H.R.1

To amend the Fair Labor Standards Act of 1938 to provide for an increase in the Federal minimum wage.
Bill # H.R.2

To amend the Public Health Service Act to provide for human embryonic stem cell research.
Bill # H.R.3

‘To amend part D of title XVIII of the Social Security Act to require the Secretary of Health and Human Services to negotiate lower covered part D drug prices on behalf of Medicare beneficiaries.
Bill # H.R.4

To amend the Higher Education Act of 1965 to reduce interest rates for student borrowers. ‘
Bill # H.R.5

To reduce our Nation’s dependency on foreign oil by investing in clean, renewable, and alternative energy resources, promoting new emerging energy technologies, developing greater efficiency, and creating a Strategic Energy Efficiency and Renewables Reserve to invest in alternative energy, and for other purposes. ‘
Bill # H.R.6


In fact, last year voted to cut Medicare and to once again deny the proposed Budget of the VA Health Care System. This System that is susposed to be available for the brain injuries as well as all the rest coming out of the Iraq War. And of course that was year 10 that the Republican controlled Congress denied the VA Budget proposal! And at War Time!


Recent Senate Votes

Cloture Motion, Medicare Prescription Drug Price Negotiation Act - Vote Rejected (55-42, 3 Not Voting)

The Senate rejected this motion to take up a bill that would have allowed the federal government to negotiate Medicare prescription drug prices with pharmaceutical companies.

Sen. John Warner voted NO…...
Sen. James Webb voted YES…...

Recent House Votes

District of Columbia House Voting Rights Act - Vote Passed (241-177, 1 Present, 14 Not Voting)

This bill would increase the size of the U.S. House of Representatives to 437 by granting the District of Columbia a full vote in the chamber and adding another seat in Utah.

Rep. Eric Cantor voted Not Voting…...


Water Resources Development Act - Vote Passed (394-25, 14 Not Voting)

The House passed this $15 billion bill funding improvements to the nation’s waterways.

Rep. Eric Cantor voted Not Voting…..


Shareholder Vote on Executive Compensation Act - Vote Passed (269-134, 30 Not Voting)

The House voted to give shareholders in public companies a nonbinding vote on executive compensation.

Rep. Eric Cantor voted Not Voting…...

In fact last year Cantor voted with the Republicans to cut Medicare. Medicare is paying up to 25% less in some areas of care that were underfunded to start with.


I wish and pray for only the best for young Andrew.  Anyones heart just sinks when learning of his plight. I for one feel that Cantor is only representing George W., ?Big Business? Bush.  Cantor is Bush?s partisan Hack. I find it disgraceful and completely hypocritical that this man posses with a ill young man who needs help in Medicine and Health Care when all he does is to make it more expensive and ensure it lasts longer! He votes no on good bills for politics!


If you wish to be notified about recent votes from you members in the House and Senate simply go to http://www.congress.org and sign up for email notification and stay informed.


Ronald L. Noe


Ronald L. Noe of Mechanicsville
Apr. 25, 2007 at 12:03 PM

They should appeal to the people’s hearts. I don’t think that all these congressmen and political people will do something for them.



Jan. 11, 2008 at 04:52 PM

I wish and pray for only the best for young Andrew.  Anyone’s heart just sinks when learning of his plight. I for one feel that Cantor is only representing George W., Bush.  Cantor is Bush’s partisan Hack.


trauma recovery center of romania
Jan. 22, 2008 at 04:26 AM

I wish good luck to the 14 year Andrew and to all those who suffer from such conditions & diseases.I hope these political people are not doing all this just for coming in the news, but would actually do something to help such infants.


Sjs info
Nov. 26, 2008 at 06:12 AM

I think now much is being done for help of children suffering from inabilities and such conditions.Many organisations/people/communities are coming forward for their help.Hope such moves keep on being made & help keeps on being offered to these people.Wish all the luck to Andrew.


Paxil birth defects
Dec. 12, 2008 at 03:10 AM

While its great that Mr. Canton is fighting for kids with spinal muscular atrophy, however, lets remember that not all birth defects are hereditary. So many are caused by a lack of prenatal health care due to un or underinsured mothers.

Is cutting the budget for medicaid and the VA a good answer? or should we all rely on the good will of private charities to take care of the masses?


birth defects of PA
Jan. 20, 2009 at 04:38 PM

I hope every body is healthy and happy.


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Dec. 1, 2009 at 12:44 PM
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