November 2016 Volunteers of the Month

Alexander Mackler and Noah Snyder-Mackler

 

Alexander and Noah were teenagers, hiking the spectacular Andes Mountains in Chile in 1998, when their parents Lynn and Scott told them of their father’s ALS diagnosis. The juxtaposition of the splendor of the South American country with this devastating news was indeed ironic. The young boys learned step by step how much their life would forever change and Alexander says, “It was a long hike back down,” as they began the learning process. The family embarked on a year-long trip, traveling the world. Their stops included South Africa, Europe and Israel before the disease would eventually take away their father’s ability to walk, talk and breathe on his own. This trip was a defining time in the lives of the Mackler family, bringing them closer together.

“It is what it is,” said Scott.  And he never looked back. Scott accepted the consequences of ALS with rare grace. And his family followed his lead. Their mother, Lynn Snyder Mackler, an Alumni Distinguished Professor of Physical Therapy at the University of Delaware who continues to be a world authority on knee rehabilitation, Scott’s mother, Helen, who sadly passed away in 2012, his brother Harvey who is a dedicated volunteer for The ALS Association and sister, Randi Windheim, along with countless friends and relatives all followed suit. And the family jumped into action as they saw an immediate need to be fulfilled – helping other ALS families.

Scott Mackler, MD, PhD was only 40 when he was diagnosed. For Mackler, a foremost authority on drug addiction with a prominent lab at the University of Pennsylvania (he held four Penn degrees), the thought of a life in which he would not be able to communicate was incomprehensible. Hence, the family put together Scott’s love of athletics – soccer and running – and established the Scott A. Mackler, 5K Memorial Run/Walk for ALS in 1999.All funds raised from this event support the Assistive Technology Program that bears his name.  Scott waged a courageous battle with ALS for well over 15 years, and his brilliant research career and full life ended on November 13, 2013. Thanks to the event, held each year at Temple Beth El in Newark DE, no patient in the tristate area has ever had to go without communicative technology for want of money.

Alexander and Noah have continued to make sure of that.

Through education, moves, marriages, births and career changes, the men have continued to stand at the helm of the Mackler 5K. So much goes into making this a successful day and while both stress that the entire synagogue community, and especially Joe Sontowski, and their family, other Penn organizations (yes, the Macklers are “all-Penn” – Harvey, Randi, Scott, Noah, Alexander and many cousins all attended) all contribute, it is so inspiring to see the commitment that Noah and Alexander continue to demonstrate.

The 5K is a Delaware mainstay – and the Macklers have maintained very strong connections with Delaware political figures who attend, including Governor Jack Markell and US Vice President Joe Biden and his wife Jill, both of whom have participated. The VPs son Beau was a fixture running and eventually walked the route even as he struggled with the effects of brain cancer which sadly took his life in May of 2015. He was a dear friend of Alexander.

 Alexander is now 33 and Noah 31. Noah is a researcher at Duke University and will be starting a job as a professor at the University of Washington in September 2017. Alexander is a federal prosecutor in Wilmington, DE. Noah and his girlfriend, Kelsey, live in Durham with their dog, Bodie, who never misses the 5K. Alexander and Laura live in Delaware with their two children, Sam and Sadie, and their ever-present dog Omar.

Alexander worked in politics for six years prior to attending Law School at the College of William and Mary. After 2-years in the White House, he continues his career in law as a federal prosecutor in Delaware. Noah has a PhD in Psychology from (surprise, surprise) the University of Pennsylvania and his primary area of research is understanding how our social environment can influence health and wellbeing in humans and nonhuman animals.

Through all their education, moves, jobs, and life changes, Noah and Alexander have made the 5K and what it supports a priority. They understand first-hand the importance of communication for ALS families. In order to be as involved as possible in both is family and work, Scott first started by using an early eye-tracking device but it was difficult to set up and had a lot of errors. When he and Lynn began to work with BCI – Brain Computer Interface – as one of their beta testers everything changed. “BCI really helped dad regain some of his autonomy, which was HUGE. The follow-up stories with Scott Pelley on “60Minutes” not only made dad a celebrity, but brought this astounding technology to the forefront. Our dad’s mastering of this technology was certainly no small feat, but today, others follow in his footsteps and for many, it is only because of The ALS Association‘s Assistive Technology Program that this is possible.” 
 
“Alexander would take dad to and from the train station before dad needed full-time help; Noah spent all four high school years as a caretaker for dad. But dad demanded that we lead relatively normal lives, and our mom made that possible. They came to our sports games, supported us in every way, and made sure we had as few inconveniences as possible. Strangely it also made us stronger and more resilient people by giving us the ability to put all of life’s challenges, however small, into perspective.”

Today, 17 years after Noah and Alexander learned about ALS in the Andes, their goal is to move the Chapter forward as it celebrates its 40th anniversary. They are proud of the Assistive Technology Program that bears their father’s name.  “We want to carry on our dad’s legacy of ensuring that everyone in the Greater Philadelphia Region is able to get the technology they need to live productive lives despite having ALS.”

It is a perfect entrée to our Chapter’s next 40 years of “Honoring the Promise. Advancing the Mission.”

Join the Mackler 5K this coming Sunday, November 6 at 12:30 pm at Temple Beth El in Newark Delaware at www.mackler5k.kintera.org/.


 
 

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002
215-643-5434

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.