Texas | SMAHeadlines.com

Angela Wrigglesworth dubbed Klein ISD elementary Teacher of the Year

May 23, 2012

Angela Wrigglesworth dubbed Klein ISD elementary Teacher of the Year

Cypress Creek Mirror | May 10, 2012

Teaching wasn’t always Angela Wrigglesworth’s career goal. In fact, she likes to joke a fluke incident in college “railroaded” her into becoming a teacher.

Wrigglesworth was diagnosed with spinal muscular atrophy when she was 16-months-old and has been wheel-chair bound nearly all her life.

During her first year at Texas A&M, she planned on getting a degree in business, which included several classes on the other side of campus from her dorm.

One day on her way to an accounting class, she was crossing a set of railroad tracks with a group of students when her wheelchair came to a dead stop. The electric current that was caused by a train that had just passed short circuited her chair mid-way through the tracks. After several minutes of panic and offers by students to help carry her extremely heavy wheelchair out of harm’s way, the chair turned back on. It was in that moment, however, that she vowed to never cross those tracks again.

“Life can lead us down so many paths, and in this particular case, my situation literally put me stuck on some railroad tracks and really changed the direction of my life,” recalled Wrigglesworth.

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Posted by stronwi

Avery’s Bucket List (Video)

April 19, 2012

Avery’s Bucket List (Video)

FOX (Houston) | April 17, 2012 | By Sally Macdonald

Vodpod videos no longer available.

HOUSTON – A five-month-old Houston baby is on a mission to teach the world about her fatal genetic disease. You’ve likely never heard of Spinal Muscular Atrophy, but 7.5 million Americans carry the gene that causes it.

Doctors have given Avery just 18 more months to live.

“Nothing will ever be the same as far as what’s important,” said Laura Canahuati, Avery’s mommy.

“I don’t want my daughter to die in vain, and I feel like if someone doesn’t tell her story that’s what’s going to happen,” said Mike Canahuati, Avery’s daddy.

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3 Comments | Awareness, Inspiration, Texas, United States | Tagged: advocacy, awareness, inspiration, Texas, united states | Permalink
Posted by stronwi

Cross Fit raises $2,700 for muscular atrophy kids

November 8, 2011

Cross Fit raises $2,700 for muscular atrophy kids

mySanAntonio.com | November 2, 2011 | By Miranda Koerner

More than 80 kids participated in exercises at Comal Cross Fit Sunday to raise donations for the Families of Spinal Muscular Atrophy (FSMA) Kids 4 Kids event.

The event raised $2,700 for the cause.

The fundraiser was organized by Comal Cross Fit’s Gretchen Bonser after her neighbor, Melissa Fruend, approached her about becoming involved with FSMA.

“Our children are so blessed and fortunate to be healthy,” Bonser said. “I thought it was only appropriate for kids to be paying it forward for kids.”

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1 Comment | FSMA, Fundraiser, Texas, United States | Tagged: FSMA, fundraiser, Texas, united states | Permalink
Posted by stronwi

ETX boy raises money for SMARD research

September 27, 2011

ETX boy raises money for SMARD research

KLTV | September 23, 2011 | By Lauren Callahan

WHITE OAK, TX (KLTV) – An East Texas boy has had Spinal Muscular Atrophy Respiratory Distress, or “SMARD”, since he was three months old.

And until recently, no one was researching the disease.

Now that a laboratory in Maine is devoted to learning more about “SMARD,” three-year-old Dakin Lovelace wants to help.

Dakin Lovelace was a healthy baby, according to his mom Devon. But when he was three-months-old, he stopped breathing. After many doctor’s visits, he was diagnosed with SMARD

“And so as a result of that Dakin can’t breathe on his own, he can’t walk. He can’t sit up on his own. Um, we are very fortunate, though, that he’s so strong. We’re very, very lucky, and he’s happy. His brain is not affected at all. He’s smart as a whip and he’s a happy boy,” says Devon.

His parents resigned themselves to the fact that Dakin would always be in a wheelchair and using a ventilator. Until they learned this summer about the Jackson Laboratory in Maine, where a researcher is starting to study SMARD.

“We lived pretty much three years having no hope whatsoever that anything anybody was doing was going to help Dakin,” Devon expressed.

There are about 60 known cases of SMARD worldwide.

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Leave a Comment » | Advocacy, Awareness, Research, SMARD, Texas, United States | Tagged: advocacy, awareness, research, SMARD, Texas, united states | Permalink
Posted by stronwi

Representative Pete Olson makes a muscle and a difference for MDA

August 23, 2011

Representative Pete Olson makes a muscle and a difference for MDA

Fort Bend Star | August 10, 2011

On Wed., Aug. 10, Representative Pete Olson (R – Sugar Land) and Deputy District Director Robert Quarles met with several representatives of the Muscular Dystrophy Association (MDA) as part of MDA’s Fly Out to discuss Transitions Services and the obstacles faced by adults living with pediatric diseases. Each year in the United States, nearly half a million youth with disabilities and chronic health conditions cross into adulthood — and the numbers continue to grow. However, barriers continue to exist for young people seeking higher education, employment and independent living.

Tomas Diaz, a 22-year-old living with Spinal Muscular Atrophy (SMA) Type II and former MDA Goodwill Ambassador, spoke with Representative Olson about middle-class young adults who don’t have the financial resources to support themselves and who also don’t qualify for government assistance.

“The greatest need in our quest for independence is finding qualified live-in attendants to help with everyday necessities,” said Diaz, who is also pursuing a master’s degree at St. Thomas University in Houston. “What if there is an emergency at my house and I can’t get out of bed? Unfortunately, private insurance and the Department of Aging will not cover the cost of an attendant living in a patient’s home.”

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Leave a Comment » | Advocacy, MDA, Texas, United States | Tagged: advocacy, MDA, Texas, united states | Permalink
Posted by stronwi

The pep rally of a lifetime

July 6, 2011

The pep rally of a lifetime

ConnectAmarillo | June 29, 2011 | By Matt Hamilton

AMARILLO, TEXAS — Hundreds of people filed into the gymnasium at Amarillo High School Wednesday afternoon, but definitely not to see a game.

No, it was for something much better, they were there to see a little girl realize her dream.

Elvira Caralles is a 10 year old girl whose smile can light up a room, a good quality for any aspiring cheerleader, but unlike most kids her age Elvira has type two spinal muscular atrophy, making that goal much more difficult.

However, thanks to the good heart of a cheerleading coach at West Texas High School, Elvira got to live her dream.

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Leave a Comment » | Inspiration, sports, Texas, United States | Tagged: inspiration, sports, Texas, united states | Permalink
Posted by stronwi

MARIA LUISA SALCINES: Life example we should all follow

May 18, 2011

MARIA LUISA SALCINES: Life example we should all follow

The Monitor | May 17, 2011

When my family and I moved to north McAllen in 1970, we moved into a neighborhood filled with kids.

My brother and I spent our free time playing softball on an empty lot or playing in the canal that was at the end of the block with the Cardenas, Tavares and the Klingberg kids.

Oscar Cardenas was the little brother of my friend Carlos, and we all knew him as the little boy with the cool go-cart. I knew when I met Oscar that he had a disability. Oscar was born with Spinal Muscular Atrophy, but when you were around him it was easy to forget and focus more on Oscar.

As a boy he was a little daredevil, riding his go-cart up and down the street. We would beg him to give us rides, then sit on the hood of the car and hold on for dear life.

He loved to go fast, and every once in a while we would fly off the car.

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Leave a Comment » | Inspiration, Texas, Tribute, United States | Tagged: inspiration, Texas, tribute, united states | Permalink
Posted by stronwi

Disabled San Antonio student lobbies for PE substitute

April 13, 2011

Disabled San Antonio student lobbies for PE substitute

mySanAntonio.com | April 12, 2011 | By Francisco Vara-Orta

A bill championed by a San Antonio high school student and a state representative to get a substitute physical education class for disabled students advanced in the House on Tuesday.

“It is completely unhelpful for children in my situation to sit there and have to experience this,” Jonathon Stach, a wheelchair-using junior in the International Baccalaureate program at Burbank High School, told the House Education Committee.

After testimony from a handful of people supporting the bill, the committee unanimously voted to send it to the House. The bill, proposed by state Rep. Joe Farias, D-San Antonio, could go into effect next school year.

Stach exemplifies the need for House Bill 692.

When he was 18 months old, Stach was diagnosed with spinal muscular atrophy, a motor neuron disease that affects voluntary muscles used for activities such as crawling, walking, head and neck control, swallowing and respiratory functions.

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Leave a Comment » | Advocacy, Legislation, Texas, United States | Tagged: advocacy, legislation, Texas, united states | Permalink
Posted by stronwi

Run for Reece coming together

March 4, 2011

Run for Reece coming together

The Intelligencer | March 3, 2011 | By Jerome Lessard

Baby Reece Elliot will be remembered this summer.

On Sept. 8, 2010 — just seven weeks old and diagnosed with spinal muscular atrophy (SMA) Type 1 — Reece died in his mother’s arms.

On Sunday, July 17, Karen Walsh will be hosting the first Run for Reece at the Bayshore Waterfront Trail in Belleville, in means to raise funds for Families of SMA and the Belleville General Hospital Foundation (BGHF).

Click HERE or on the image below to read more…

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Posted by stronwi

SMA Foundation and Rules-Based Medicine Collaborate on Biomarker Panels to Guide SMA Therapeutic Development

January 19, 2011

SMA Foundation and Rules-Based Medicine Collaborate on Biomarker Panels to Guide SMA Therapeutic Development

Press Release | January 19, 2011

NEW YORK and AUSTIN, Texas, Jan. 19, 2011 /PRNewswire/ — The Spinal Muscular Atrophy (SMA) Foundation and Rules-Based Medicine, Inc. (RBM) announced today that they have reached the first milestone in a program to develop a panel of plasma protein biomarkers for SMA using RBM’s Multi-Analyte Profiling (MAP) technology platform. In this collaboration, RBM will discover and also confirm plasma protein biomarker candidates previously identified from the multicenter Biomarkers for SMA (BforSMA) clinical study sponsored by the SMA Foundation and conducted by BG Medicine. The identification of such biomarkers may help to assess drug efficacy and shorten the duration of clinical trials of SMA therapies.

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