Inspired to Act: Aaron Bolinsky is New Uplifting Athletes Chapter President
7/31/2020 9:00:00 AM | Football
SYRACUSE, N.Y. – At 7:45 a.m. last Wednesday, there were only a handful of Syracuse players in the weight room at the Iocolano-Petty Football Complex. Wednesday is the team's day off, so the facility was unusually empty. A couple of players used rollers to loosen up. A few more chatted with strength coaches. But upstairs on the second level, the wheels of a stationary bike spun furiously. Junior long snapper Aaron Bolinsky was pedaling his 10 miles.
Bolinsky's 10-mile workout was dedicated to a much greater purpose than fitness, though. He biked the miles as part of a fundraising effort called the "7,000 Mile Challenge" started by Uplifting Athletes earlier this month. A non-profit organization aimed at inspiring the rare-disease community through the power of sport, Uplifting Athletes is a nationwide network of local chapters led by current college football student-athletes. The group's primary goal is to raise money and awareness for those impacted by rare diseases. A rare disease is classified as one that affects fewer than 200,000 people in the United States.
The Orange football program has a close connection to Uplifting Athletes. Former long snapper Sam Rodgers started the Syracuse chapter in 2013 in honor of All-BIG EAST punter Rob Long, who was diagnosed with anaplastic astrocytoma, a rare form of brain cancer, in 2010. Long eventually made a full recovery and now works as the executive director for Uplifting Athletes.
In recent years, offensive linemen Jason Emerich, Sam Heckel and quarterback Zack Mahoney have served as president of Syracuse's chapter. Through their leadership, and that of others, the Syracuse chapter has become one of Uplifting Athletes' most successful. The Orange's annual "Lift for Life" routinely raises between $5,000 and $10,000 per year to support the rare-disease community.
Bolinsky is now following in the footsteps of those past presidents. The Frackville, Pennsylvania native was inspired to accept the chapter presidency for the 2020-21 academic year in part because of what he experienced as a child.
At just four months old, Bolinsky was diagnosed with Infantile Spasm Disorder – one of the more than 7,000 rare diseases that affect an estimated 25 million to 30 million Americans. The disorder caused him to experience small, but dangerous seizures. Left untreated, infantile spasms can slow a baby's development and may result in epilepsy later in life. The most severe cases can be deadly.
"My mom and dad were in the car one day and I was in my car seat and they saw it happen – my arms and legs would straighten, then drop," Bolinsky said.
Frank and Allison Bolinsky recorded a video of their son and sought medical advice. After being waitlisted at multiple hospitals, they finally found the answer they were looking for at Johns Hopkins. Aaron was given a shot in the thigh every day for six months. He finished his treatment on his first birthday and was fortunate enough to overcome the disorder.
Fast forward 20 years and Bolinsky is helping kids struggling with similar diseases. When the opportunity to become Syracuse's chapter president arose, he couldn't help but think about his childhood. Bolinsky previously didn't talk much about his early health challenges, but his position allows him to do so now and inspires others at the same time. He wants to support families going through the same things he did.
"If I can have conversations and raise awareness [about rare diseases], then that's my biggest why," Bolinsky said.
In just a few months as president, Bolinsky is already making an impact. At a recent Uplifting Athletes conference in Georgia, he met a young girl diagnosed with WAGR syndrome – a rare genetic condition that affects one in every 500,000 to 1 million people. Bolinsky spoke with her and her parents and made an immediate connection.
"Her speech isn't the best and she struggles to walk sometimes. So, a lot of [the meeting] was talking to her parents and learning about her and her condition," Bolinsky said.
Because of how uncommon some diseases are, they often lack the funding and research necessary for a cure. It's powerful, Bolinsky said, for members of the rare-disease community to relate in this way. He still checks in with the girl's mother to catch up and see how she's doing.
"I know those parents are going through the same type of thing that my parents did. It's definitely given me a different perspective," Bolinsky said.
When Bolinsky got up on his off day to ride those 10 miles, there were greater forces pushing him to do so. They were the memory of his younger self, the patient he met in Georgia, and the millions more around the country living every day with a rare disease.
For complete coverage of Syracuse football, follow us on Twitter (@CuseFootball), Instagram (@CuseFootball) and like us on Facebook (Syracuse Football).
Bolinsky's 10-mile workout was dedicated to a much greater purpose than fitness, though. He biked the miles as part of a fundraising effort called the "7,000 Mile Challenge" started by Uplifting Athletes earlier this month. A non-profit organization aimed at inspiring the rare-disease community through the power of sport, Uplifting Athletes is a nationwide network of local chapters led by current college football student-athletes. The group's primary goal is to raise money and awareness for those impacted by rare diseases. A rare disease is classified as one that affects fewer than 200,000 people in the United States.
The Orange football program has a close connection to Uplifting Athletes. Former long snapper Sam Rodgers started the Syracuse chapter in 2013 in honor of All-BIG EAST punter Rob Long, who was diagnosed with anaplastic astrocytoma, a rare form of brain cancer, in 2010. Long eventually made a full recovery and now works as the executive director for Uplifting Athletes.
In recent years, offensive linemen Jason Emerich, Sam Heckel and quarterback Zack Mahoney have served as president of Syracuse's chapter. Through their leadership, and that of others, the Syracuse chapter has become one of Uplifting Athletes' most successful. The Orange's annual "Lift for Life" routinely raises between $5,000 and $10,000 per year to support the rare-disease community.
Bolinsky is now following in the footsteps of those past presidents. The Frackville, Pennsylvania native was inspired to accept the chapter presidency for the 2020-21 academic year in part because of what he experienced as a child.
Help join the fight!! Link in Bio🍊 https://t.co/1m3GHJ6C6e
— Aaron Bolinsky (@aaron53bolinsky) July 8, 2020
At just four months old, Bolinsky was diagnosed with Infantile Spasm Disorder – one of the more than 7,000 rare diseases that affect an estimated 25 million to 30 million Americans. The disorder caused him to experience small, but dangerous seizures. Left untreated, infantile spasms can slow a baby's development and may result in epilepsy later in life. The most severe cases can be deadly.
"My mom and dad were in the car one day and I was in my car seat and they saw it happen – my arms and legs would straighten, then drop," Bolinsky said.
Frank and Allison Bolinsky recorded a video of their son and sought medical advice. After being waitlisted at multiple hospitals, they finally found the answer they were looking for at Johns Hopkins. Aaron was given a shot in the thigh every day for six months. He finished his treatment on his first birthday and was fortunate enough to overcome the disorder.
Fast forward 20 years and Bolinsky is helping kids struggling with similar diseases. When the opportunity to become Syracuse's chapter president arose, he couldn't help but think about his childhood. Bolinsky previously didn't talk much about his early health challenges, but his position allows him to do so now and inspires others at the same time. He wants to support families going through the same things he did.
"If I can have conversations and raise awareness [about rare diseases], then that's my biggest why," Bolinsky said.
In just a few months as president, Bolinsky is already making an impact. At a recent Uplifting Athletes conference in Georgia, he met a young girl diagnosed with WAGR syndrome – a rare genetic condition that affects one in every 500,000 to 1 million people. Bolinsky spoke with her and her parents and made an immediate connection.
"Her speech isn't the best and she struggles to walk sometimes. So, a lot of [the meeting] was talking to her parents and learning about her and her condition," Bolinsky said.
Because of how uncommon some diseases are, they often lack the funding and research necessary for a cure. It's powerful, Bolinsky said, for members of the rare-disease community to relate in this way. He still checks in with the girl's mother to catch up and see how she's doing.
"I know those parents are going through the same type of thing that my parents did. It's definitely given me a different perspective," Bolinsky said.
When Bolinsky got up on his off day to ride those 10 miles, there were greater forces pushing him to do so. They were the memory of his younger self, the patient he met in Georgia, and the millions more around the country living every day with a rare disease.
For complete coverage of Syracuse football, follow us on Twitter (@CuseFootball), Instagram (@CuseFootball) and like us on Facebook (Syracuse Football).
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