Charro legacy lives on through support of ALS Association children’s program

The ALS Association, with the help of the Scottsdale Charros, offers families impacted by ALS chances to do things they might not get the chance to do otherwise given the deep emotional and financial burden the disease forces upon families. (Submitted photo)

A diagnosis of amyotrophic lateral sclerosis, also known as ALS, is devastating to not only the victim of the unforgiving disease but to the loving people around them.

A diagnosis of this magnitude reshapes the rest of the lives of those afflicted and has far-reaching implications for all of those connected to the victim of the disease, ALS experts agree. The disease took the proud gallop from the Iron Horse — one of America’s greatest heroes, Lou Gehrig — and gives no mercy to those touched by the neurodegenerative disorder.

But along with the devastation of the disease, officials at the ALS Association of Arizona contend, new treatments have emerged and a vast system of support infrastructure that exists for those afflicted.

“The ALS Association Arizona Chapter serves and empowers people affected by ALS to live their lives to the fullest,” said Amy Frank, director of care services at the ALS Association Arizona Chapter.

A view of the teen event provided by the ALS Association Arizona Chapter. (Submitted photo)

“From the earliest stages of our program, the ALS Association has recognized novel approaches that have led to significant ALS research breakthroughs. To date, the ALS Association has funded more than $128 million in ALS research. We are funding over 113 projects in nine countries.”

Ms. Frank contends the dollars and cents raised by the ALS Association has led to research that appears to be showcasing the chance for a true ALS treatment to emerge.

“Identifying ALS genes that contribute to ALS disease allows scientists to target them for therapy, essentially increasingly the likelihood that a treatment will be found,” she said.

“Four new ALS genes that contribute to the development of the disease have been identified in the last two years and the first new drug to be approved by the FDA in 22 years, Radicava, is now being used to slow the progression of the disease.”

Finding a workable treatment is a pursuit supported by the Scottsdale Charros as just a few years earlier one of their own was lost to the fatal disease.

In the spring of 2007 Scottsdale resident, proprietor and Charro, Steve Posso’s life was changed forever. Following back surgery earlier that year he began to experience symptoms of what would later be diagnosed as ALS.

Nancy Posso displays her favorite photo of her son, Steve. (File photo)

While the disease over an eight-year period would eventually take the physical prowess — one that garnered him accolades on both playing fields and in particular on the tennis court — of Mr. Posso, it never took who he was or how he encountered the world around him.

Mr. Posso died at the age of 51 Tuesday, Jan. 27, 2015.

But through his passing, Mr. Posso’s legacy lives on through the Posso’s Posse Children’s Program made possible by The Charro Foundation. Furthermore, Scottsdale Charro Jason Heetland, who offered his sponsorship of the most recent ALS grant, explains in total three members of the Charros have fallen victim to ALS.

Mr. Heetland lost his father, Rick, to the disease as well as fellow Charro Woody Bueler. In honor of their memory, the most recent grant program offered to the ALS Association is a $10,000 shot in the arm to make the local children’s program possible.

“For the past three years, grant funds from the Charro Foundation have been instrumental in implementing portions of the ALS Association Arizona Chapter’s Youth Program, titled Posso’s Posse,” Ms. Frank pointed out.

“ALS does not only affect the patient, it also takes a tremendous toll on the entire family — physically, emotionally, and financially. This program provides youth in Arizona, whose families are dealing with the realities of ALS, opportunities to connect with other youth facing parallel challenges, and has been expanded to include some activities for the entire family.”

For 56 years the Scottsdale Charros have been in constant pursuit of improving the lives of Scottsdale residents while preserving the community’s ties to its western heritage.

Ms. Frank says the program’s impact on the lives of those afflicted is significant.

“Based on the overwhelmingly positive responses from youth participants and parents alike, it is apparent that this program fills a need within the community of those living with ALS,” she explained. “All 100 percent of youth reported feeling supported by others in the program. One youth expressed, ‘the program allows me to feel less alone and make friends with people who have been through the things that I have.’”

According to Ms. Frank, the ALS Association youth program here in Arizona utilizes an atmosphere of fun to create connection and support for youth impacted by a loved one’s ALS diagnosis. Events include:

  • Kids Day Out — This program is an opportunity for kids ages 6-18 to be able to take a break from the realities of ALS and lose themselves in play while connecting with peers in similar situations.
  • Family Connection — Each month a group dinner is provided and followed by breakout sessions divided into three groups: parents, teens (13 – 18), and youth (6 – 12).
  • Teen Adventure Day — This effort is designed to further establish the bonds being built through the other program components and consists of a day of adventure activities to have fun and foster team building.
  • Family Field Day – Due to Lou Gehrig’s success as a professional baseball player, many ALS families feel a special kinship with the game of baseball.

To learn more how you can help those afflicted with ALS, go to webaz.alsa.org.

Northeast Valley Managing Editor Terrance Thornton can be contacted at tthornton@newszap.com

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