Local youth think outside the box for ALS

Local youth think outside the box for ALS

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Sullivan Meyer, Team SPIKE’s first Chief Inspiration Officer

What can young people do to fight a debilitating and fatal disease?  Lots, according to participants of Hopewell Valley’s first-ever Robotics competition to develop assistance devices for people with ALS.

ALS is also known as Lou Gehrig’s Disease to honor the beloved Yankees baseball player who left the sport at age 36 due to the ravages of the disease and died of it two years later.  ALS kills neurons, which stops the brain from initiating and controlling muscle movement. People in the latter stages of the disease can become paralyzed. (ALSA.org)

In the Hopewell Valley, ALS is an inspiration for the CHS Robotics Team called Team 293 SPIKE and the focus of its Make-A-Thon and Expo Fair held Saturday, September 28 at the high school.  Twelve teams were represented and judged in a variety of categories.

Sullivan Meyer, a CHS Senior and Team SPIKE’s first Chief Inspiration Officer explained in an email: “I have been in charge of the team’s internal culture and external impact. For internal culture, we drafted and ratified a team mission and culture statement, and for external culture, we ramped up our outreaches to events such as the Harvest Fair and HVRSD science fairs. I still wanted a central event to represent our internal and external impact, so, after tooling with many ideas for such an event, I finally settled on the Make-a-thon concept: a one-week problem-solving challenge that expresses our mission to share and spread the benefits of STEM throughout our community.

Visitors review SPIKE Make-a-Thon submission

“I wanted 293 SPIKE to play a more outsized role in its community, especially in terms of STEM education and accessibility. For this reason, the Make-a-thon is not only open to the public, but it is open to all ages and ability levels. We subsidized registration fees and opened our state-of-the-art shop to people outside of the team, allowing us to give people without a background in STEM an introduction to engineering design and fabrication.

“The Make-a-thon’s connection to ALS came through a slightly more round-about way. In the initial phases of 293 SPIKE’s inspiration effort, I was talking with Paul Kloberg, the treasurer of the regional robotics league that we are a part of (FIRST Mid-Atlantic), and he suggested that we go to a fundraiser that a former co-worker, Deb Fabricator, was running. That fundraiser was the John Bocskocsky Memorial Event, which Deb was running in honor of her brother, who died from ALS. Through that event, we got more invested in the ALS community, and realized that the Make-a-thon provided a perfect platform to further raise awareness for ALS, and to even benefit those with ALS.

“We also reached out to Sara Cooper, a local marketing professional who was diagnosed with ALS 10 months ago, and Jodi O’Donnell, the founder of Hope Loves Company (a non-profit that runs camps around the country for families related to ALS). Their involvement has been invaluable and inspiring: Deb, Jodi and Sara each spoke at our Make-A-Thon Kick off.” 


SPIKE’s Make-a-thon Challenges:

  • How can we help those living with ALS, who have a difficult time using their hands, to hold a fork?
  • If a person with ALS can no longer speak, how can we best help them to continue with daily communications?
  • How can we help them write and take notes?
  • How can we help people with ALS keep track of the demands, exercises and progress of their physical therapy?
  • How can we help those with ALS pull up their pants?
  • How can we help transfer a paralyzed individual from out of bed and into a wheelchair?

Fabricator, Cooper and O’Donnell also were Judges at the Fair along with Jamey Piggott, Director of Development and Community Outreach for ALSHF.org, and HVCHS Physics teacher Jessica Barzelai.  All spoke, praising the dedication of the participants to focusing on helping ALS patients “live with dignity.”  Assemblyman Andrew Zwicker (D- NJ 16), who is Chair of the State Assembly’s Science, Technology and Innovation Committee also spoke.

Team Flipper, which includes CHS Seniors Flepp Wallace, Sean Moore, and Giles Thomas, were the winners of the Fair’s Entrepreneurship Prize for their subscription-based wheelchair service.  The team left its comfort zone of STEM invention to venture into the nuts and bolts of how ALS patients struggle to get access to equipment to help them get about in daily life.  Thomas explained that their first idea had been to create a wheelchair that would rise and recline.  But, he said, that invention already exists.  However, the group was very surprised to find how expensive such wheelchairs are.

Thomas noted the groups’ research revealed that wheelchairs for ALS patients cost approximately $40,000 and are only covered by Medicare 80% every five years. He explained that, because the disease is progressive, wheelchairs have a fairly short useful life.  “What may work in the first year or two may not be useful at all in the third year,” he said, which would force wheelchair users to pay out of their own pocket for a new chair or wait until the end of the five-year term.

Team Flipper members Flepp Wallace, Sean Moore, and Giles Thomas

Team Flipper’s research unexpectedly led them into extensive review of multi-chapter Medicare rules and development of, instead of a robot, a business plan.  That plan proposes a rental wheelchair service that would exchange chairs for its users as the disease progresses and needs change.  The team believes that the plan would reduce costs and be much more beneficial to the ALS patients.

In a press release issued after the event, Piggott was quoted as saying of Team Flipper: “To have these guys think of the back end was absolutely fantastic. They could go now and advocate for Medicare. They understand.” 

Asked how the team had learned about insurance, the needs of ALS patients, and how to write a business plan, Thomas responded with surprise at the question: “independent research!” he replied.


Team FAOC Elliot Casagrande and James Gervasoni

Representing one of the younger teams, Team FAOC from Timberlane won the Judges’ award for its exoskeleton design. Sixth-grade team members James Gervasoni and Elliot Casagrande explained that their exoskeleton would be used to support the body and utilize a signal from the brain to move otherwise unresponsive limbs.  Casagrande noted that such a design would assist not only those with ALS but with other diseases and those injured such as military troops.

The twelve teams included participants ranging in age from seven to adult and representing all the schools in the Hopewell Valley. In addition to the exoskeleton and business plan, other winning entries included a working prototype of a fork worn on a stiff bracelet that could be slipped over a patient’s fingers and a wheelchair that could rise to bed-level.

Meyer said he expects that this will only be the beginning for 293 SPIKE in its efforts to increase awareness and interest in STEM and extend the benefits of STEM in the community. 

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Amie Rukenstein
Amie Rukenstein is a very curious and enthusiastic resident of Hopewell Township who can never let a question go unanswered. Amie lives in Titusville with her husband, Ron, and numerous pets. She vastly enjoys frequent visits from her college-age children and their friends. In most aspects of her life, including with her new role at MercerMe, Amie is an organizer. With a full-time job and as a member of several non-profit organizations, she finds herself most often with her laptop open and excel and google on the screen. She does, however, leave the computer as often as possible to hike in Washington Crossing Park. Amie and Ron recently purchased what appears to be the oldest structure in Titusville. Known as The Titus Store at the corner of Church and River Drive and abandoned for 20 years, they look forward to restoring the building to its former glory.

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