Tuesday, November 13, 2018
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20181015 SHSALSAwarenessWhen her sister-in-law, Gracie Sanchez, died from a neurodegenerative disease a few years ago, Nicole Cruz recalled that watching Sanchez slowly pass away put an emotional toll on her family.

“She basically became completely paralyzed, losing the ability to speak in the end, it was one of her favorite things to do,” Cruz said. “To see her no longer able to talk was devastating.”

Sanchez passed away after being diagnosed with Amyotrophic Lateral Sclerosis, or Lou Gehrig ’s Disease, which attacks nerve cells in the brain and spinal cord, rendering most patients totally paralyzed and with a life expectancy of three to five years following a diagnosis, according to the ALS Association.

As many as 30,000 Americans are affected by the disease, including Cruz.

“It’s a process when you lose someone to something so devastating because you ask yourself, ‘how do you continue her legacy?’” Cruz asked.

To raise awareness of this disease, Cruz, the head librarian at Sharyland High School, reached out to the Texas Chapter of the ALS Association. This led to Aurora “Rori” Ortiz, Regional Development Manager for the Texas ALS Chapter, to lead a presentation on the disease to Sharyland High School’s softball team Monday afternoon.

“If patients live past two years, it’s a miracle,” Ortiz said, adding that there are 43 families living in the Rio Grande Valley who has a family member with ALS.

“Awareness is the biggest thing patients living with the disease need,” Ortiz said, recalling the ice bucket challenge, a viral social media challenge from four summers ago that raised millions for ALS research. “The problem with that challenge, however, is that people didn’t associate ALS with it. It was a detriment because it was a social media fad that faded fast and the ALS Association was left with less people donating. We’re trying something different.”

The Texas ALS Association is joining the Sharyland Independent School District for a Walk to Defeat ALS Saturday, Nov. 10 at the Bannworth Park in Mission. At her presentation to the softball team, Ortiz invited the athletes to volunteer at the event and to also sell wristbands for the event where proceeds would benefit ALS research and ALS patients.

“The walks are a nationwide movement to spread awareness on ALS, “Ortiz explained. “Wristband sales and the word of mouth for this event will provide much more longevity in creating awareness for this campaign. Through tragedy, the best way to get past the loss of someone is with the help of the community because seeing someone going through the same thing you are helps you relate to them. That’s what awareness brings.”

According to Ortiz, the campaign with Sharyland will be the first of its kind for high school students in the state. Ortiz challenged the students to sell at least 10 bracelets for $1 each, a challenge that the students enthusiastically accepted.

Cruz said she plans to invite other organizations and athletic teams, such as the baseball team, book club and school cheerleaders involved by having them also sell wristbands.

Though the ASL Association has walks throughout the state, next month’s walk would be the first of its kind for the area.

“I’ve been trying to partner up with high schools and colleges in San Antonio and it never worked out until now,” Ortiz said. “It’s growing into something bigger than us. The fact that these students were so enthusiastic about this event is going to have a large impact.”

Awareness of the disease won’t just raise funds for research, Cruz and Ortiz said. It will also help patients like Gracie who suffered two years of being misdiagnosed with different diseases as her condition worsened. She wasn’t diagnosed with ASL until nearly three years after she started showing symptoms, she said.

“At the end of the day, all our work goes towards finding hope and providing a cure,” Ortiz said.

For more information on ASL and the upcoming Defeat ASL Walk, visit http://www.alstexas.org/ or contact Ortiz at This email address is being protected from spambots. You need JavaScript enabled to view it..