The Horton Family has known about spinal muscular atrophy (SMA) for less than two years, but they are rapidly becoming strong advocates for SMA families and research - visiting Mississippi’s members of Congress and engaging their community in the fight against the disease. One way that the Horton’s reach out is through newspaper articles, another of which was just published by The Clarion-Ledger, which circulates statewide.

From this article:

Evie Horton, 3, glides across the living room in her wheelchair.

Two years ago, she was a seemingly normal toddler. Her dad, Jeff Horton, recalls thinking, “She’s gonna walk any day now.” But she never did.

So concerned, Horton and wife, Dee, of Flowood took Evie to an orthopedic specialist in March 2008, but tests didn’t reveal any problem.

By April, Evie quit putting weight on her legs altogether. She was referred to a pediatric neurologist, and within a couple of months, was diagnosed with spinal muscular atrophy - a genetic disease that causes muscles to weaken and become useless.

It is the No. 1 genetic cause of death of children 2 and younger and about one in 6,000 infants are born with it.

The article also says:

This past summer, they wanted to do something on a larger scale to help others coping with SMA. Jeff reached out to politicians and received support from Congressmen Gregg Harper and Bennie Thompson, and Sen. Roger Wicker, all of whom co-sponsored the SMA Treatment Acceleration bill. Gov. Haley Barbour declared August Spinal Muscular Atrophy Awareness Month.

Later, with the help of friends, family and co-workers, the couple started the Stop SMA Foundation to raise awareness and fund research, specifically for treatment or drugs nearing FDA approval.

Funds generated may help usher in real hope for SMA patients because experts say a treatment or a cure is possible within five years.

To read the full article, click here.

For information about the SMA Treatment Acceleration Act, click here.

Over the weekend, the Rankin Ledger ran an article about the Horton Family of Flowood, Mississippi. Jeff and Dee Horton took up the fight against Spinal Muscular Atrophy after their daughter Evie was diagnosed with the disease and as you may know from previous blog posts, they have been leading efforts to gain support from Mississippi’s Senators and Representatives for the SMA Treatment Acceleration Act, visiting Capitol Hill during the 2009 FightSMA Annual Conference in Washington, DC.

In the article, Jeff describes what lead them to become concerned. He said, “At one year, Evie was able to stand, cruise furniture and grab onto fingers of adults….We just weren’t seeing progress in Evie six months later. She wasn’t walking without assistance and seemed scared to walk on her own. The real alarm was when we saw her on the floor, lifting her legs with her hands to move them.” Despite her struggles, Evie is a beautiful, happy little girl who “talks up a storm and loves to sing.”

Click here to read the full article.

Dee Horton and daughter Evie met with Senator Roger Wicker (R-MS) to thank him for cosponsoring the SMA Treatment Acceleration Act (S 1158).

FightSMA would like to thank all of the U.S. Representatives and Senators that have signed on to support the SMA Treatment Acceleration Act. Your leadership and dedication to finding a cure for spinal muscular atrophy (SMA) is admirable and appreciated by the thousands of people whose everyday lives are affected by this cruel disease.

As of August 12, 2009, the following Members have signed on as cosponsors of the SMA Treatment Acceleration Act (HR 2149, S 1158):

House of Representatives

Senate

Don’t see your Members’ name on here? Let them know that you support the SMA Treatment Acceleration Act and they should too! Here’s 5 Ways:

1. Write a letter to your Congressman and Senators expressing your support of the bill. Need help? Click here!
2. Call your Members of Congress to let them know you support the bill. If you need contact info, call or email Caroline Gibson (804-515-0080, carolinegibson@fightsma.com)
3. Schedule a meeting with your Members in their district office. Email Caroline Gibson for help (carolinegibson@fightsma.com) Traveling to DC? Make an appointment in their Capitol Hill offices!
4. On Twitter? In just 30 seconds, you can “tweet” your Members of Congress by “Tweeting for a Cure” at http://www.EndSMA.org/twitter
5. Sign the PetitionToCureSMA.com. Over 69,000 people (and counting) have already signed!

Thank you for all you are doing to fight SMA!

Jeff Horton is a Dad.  But he’s not just any Dad — he’s a Fighter Dad.  After his daughter, Evie, was diagnosed with Spinal Muscular Atrophy (SMA), Jeff became proactive in getting the word out about the disease.  SMA, as you might know, is the number-one inherited killer of children under the age of two.

In April 2009, Jeff attended his first FightSMA Annual Conference in Washington, DC, and participated in the annual Capitol Hill Day.  You can see him to the right with Congressman Gregg Harper of Jeff’s home state of Mississippi.  In preparation, Jeff did some work “in the field” back home in order to gain the support of his Members of Congress.  He had one goal: to get all of his Members to sign on as cosponsors for the SMA Treatment Acceleration Act.

Jeff agreed to share his experience with FightSMA and our blog readers.

…Click here to read more.