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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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).

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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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Mother accepts son’s posthumous UTPA degree

December 19, 2010

Mother accepts son’s posthumous UTPA degree

The Monitor | December 18, 2010 | By Naxiely Lopez

MCALLEN — Yolanda Morado, the mother of a University of Texas – Pan American student who died in August, was met with a standing ovation and roaring applause as she received his posthumous degree during the Fall 2010 Commencement Ceremony Saturday at the McAllen Convention Center.

Her son Victor M. Alvarez, who suffered from spinal muscular atrophy, was well-known for his determination and joie de vivre among many in the South Texas community. Alvarez, a columnist for The Monitor, lived a full life despite his degenerative disease, said many who knew him.

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