After their daughter Evie was diagnosed with spinal muscular atrophy (SMA), Jeff and Dee Horton perceived a lack of knowledge and awareness of SMA in their community and even among many doctors. Desiring to do everything in their power to help Evie and others like her, the Hortons founded Stop SMA, a non-profit dedicated to battling SMA.

Now, Stop SMA is in the running to raise $250,000 for SMA research through the Pepsi Refresh Project. As of today, Stop SMA sits in 4th place among $250,000 candidates, but they need to be one of the top two when the end of the month rolls around to qualify for funding. Supporters can help move Stop SMA up the list by voting each day in March and asking their friends and family to do the same.

At only 12 years old, Erinne Williams is already an inspiration to a lot of people. She was diagnosed with spinal muscular atrophy (SMA) at 14 months of age and doctors predicted she wouldn’t live beyond her 8th birthday. Because of SMA, Erinne has endured more than most of her peers, including multiple hospitalizations and surgeries. While the wheelchair she depends on is plainly visible, the metal rods in her back that help to counteract scoliosis are not. In addition, Erinne depends on a ventilator to help her breathe and a feeding tube to help her eat. But, despite having a disease that progressively weakens her muscles and she knows will some day take her life, today, Erinne is a seventh grader who enjoys playing wheelchair sports like hockey, soccer, and baseball.

Erinne has made such an impact on her community, that it has even rallied around her and her family - literally. A pep rally was help at Erinne’s school as part of an attempt to convince the producers of the tv show “Extreme Makeover: Home Edition” to help Williams family obtain a wheelchair accessible house. The application to the show is pending.

To read more about Erinne, click here or here.

To see footage about Erinne, click here.

Congratulations to our friends at the Gwendolyn Strong Foundation. Their phenomenal outreach across the internet successfully garnered enough votes for the Foundation to be named to Top 100 list in the Chase Community Giving Campaign on Facebook. This honor comes will a $25,000 award and the chance to move on to round two where they will compete for a $1 million grant.

From the Gwendolyn Strong Foundation:

December 16, 2009
Gwendolyn Strong Foundation Top 100 Charity, Wins $25,000 Grant From Chase Facebook Campaign

This is truly unbelievable, incredible!

Today, we received news from Chase that the Gwendolyn Strong Foundation was selected as one of the top 100 charities, based on YOUR votes, in their Chase Community Giving campaign on Facebook. Thus, GSF will receive a $25,000 grant from Chase and will advance to round 2 of the campaign with a chance to win as much as $1 Million.

We’re still gathering information and to be honest it’s still sinking in, but we wanted you all to know this amazing news right away since none of this would have been possible without each and every single one of your votes and your personal, passionate efforts to prop the Gwendolyn Strong Foundation up on your shoulders. This is another humbling example of how this vibrant, active SMA community and every person that this horrible disease touches can collectively accomplish anything that we put our minds to as one, united, motivated voice.

We are excited to be donating 100% of this grant to Dr. Hans Keirstead’s promising SMA stem cell program at UC Irvine. As most of you know, this groundbreaking research has the potential to cure SMA and have a material, positive impact on all science forever. We know that this grant will help Dr. Keirstead and his team accelerate the process to get this treatment to human clinical trials as safely and efficiently as possible and to the children in need of a cure.

From the bottom of our hearts, thank you, thank you, thank you to each and every one of you. Now, on to ROUND 2! As a community, let’s go get that $1 MILLION to help CURE SMA once and for all!

Click here to go to the Chase Community Giving campaign on Facebook to see the top 100 charities.

Click here to read the press release from Chase.

Don’t know what spinal muscular atrophy (SMA) is? Learn more here.

Mike Bush, news anchor for KSDK’s NewsChannel 5 in St. Louis, did a piece about a recent show at the Touhill Peforming Arts Center at the University of Missouri-St. Louis. But, being a musical version of a classic Mark Twain novel is not what made “The Adventures of Tom Sawyer, the Musical” extraordinary. This show was put on by the Variety Children’s Theater which provides children and teens with disabilities the opportunity to work alongside professionals in all parts of the production, including on-stage performance, costume design, set design, stage management, etc.

One of the children spotlighted in Bush’s report is Kaci Conley, a ten year old with spinal muscular atrophy (SMA). When she was born, Kaci’s parents were told she wouldn’t even speak. Through hard work she has proved the prediction wrong, winning the role of Penny Temple in the musical and singing and dancing with all the other actors.

To read the full article or watch the video of the news report, click here.

Bill Strong, who founded the Gwendolyn Strong Foundation with his wife Victoria and who recently joined the FightSMA Board of Directors, was invited to do a radio interview for “Focus on Issues.” This wonderful interview, which aired four times during this past weekend, covers a broad range of subjects from how the Strong’s daughter Gwendolyn is doing to the need for more research to how individuals can help in the fight against spinal muscular atrophy (SMA).

Click here to listen to the whole interview

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.

Exceptional Parent Magazine, a publication for families and professionals in the special needs community, recently posted on their website a piece about the 2009 FightSMA Annual Conference that was held in April this year.

The 2009 FightSMA Annual Conference in Review
Sep 24, 2009

During the 2009 FightSMA Annual Conference the energy was actually palpable! Excitement, camaraderie and a renewed sense of determination pulsed through each of us. The large conference room at the L’Enfant Plaza Hotel in Washington, DC hosted a collection of amazingly dedicated people, sharing the same goal and focus: eradicating Spinal Muscular Atrophy (SMA), the number-one genetic killer of children under the age of two.

Advocates from Utah to New Jersey, from Georgia to New Mexico, gather together each year to join forces, share information, and celebrate their important mission. Researchers from across the country and often the world come together year after year to share new discoveries and developments, some even unpublished, with these eager families and friends whose lives have been affected by Spinal Muscular Atrophy. And, every year we march as one to Capitol Hill, sharing with our nation’s leaders the importance of this little-known, but wicked disease.

The 2009 FightSMA Conference was monumental: the SMA community had a bill in Congress for the first time in history, and they had a specific request for each Senator and Congressman, which was to cosponsor this legislation. The bill, the SMA Treatment Acceleration Act (HR 2149, S 1158), is currently in its second Congress and all of our community has been working tirelessly on a grassroots level to get this legislation passed.

To read the full article, click here. Registration required.

Mississippi Governor Haley Barbour has declared the month of August as Spinal Muscular Atrophy Awareness Month in the State of Mississippi. The SMA community would like to thank Governor Barbour for his leadership, support, and commitment to finding a cure for SMA, the number-one genetic killer of children under the age of two.

Click here to read Governor Barbour’s proclamation.

Patrick’s Buddies’ 3rd Annual Rubber Duck Race was a tremendous success! Held Sunday, June 7, 2009 at Mindowaskin Park in Westfield, NJ, the race is estimated to have raised between $13,000 and $14,000 for spinal muscular atrophy (SMA) research. According to Maureen Higgins, head of the New Jersey chapter of FightSMA, the generosity shown by their supporters is extremely impressive given the charities in their area have been suffering during the economic downturn.

Recognition must be given to the employees of PTC Therapeutics for their tremendous support. Headquartered in South Plainfield, NJ, they had a “gaggleometer” in the office to tally their donations, which reached close to $1,000 from the individual employees! One of the PTC scientists who works on SMA, Amal Dakka, attended the event and helped Patrick give the signal to dump the ducks in the water at the start line. Maureen said, “I was very excited to have their support. It’s great that our supporters can see an actual scientists who benefits from this crazy duck race we throw every year!”

Bill and Victoria Strong of Santa Barbara, California dove into the fight against Spinal Muscular Atrophy (SMA) after their daughter Gwendolyn was diagnosed with the most severe form of the disease, type 1. Not only did the Strong Family found the Gwendolyn Strong Foundation to raise awareness and research funding, but they started the Petition to Cure SMA. More than 64,800 people worldwide have signed the petition to show their support for the SMA Treatment Acceleration Act which was re-introduced in both the House of Representatives and the Senate.

The Strongs recently began a new project - turning a family reunion into an opportunity to raise awareness and funding for SMA research. The family will be driving from California to Mississippi, 5,000 miles round trip, so that Gwendolyn can meet her 104 year old great-grandfather. They are asking donors to Sponsor a Mile, with the proceeds going to support the Foundation’s mission.

The Strong’s and their campaign were profiled by Santa Barbara’s KEYT-3 news: