Reps for Rare Diseases
Mission
Inspire the Rare Disease Community with hope through the power of sport
Vision
Empower people to take action against rare diseases and be a catalyst for the medical community to find cures
Our History
Reps for Rare Diseases gives hopeful NFL players an opportunity to share their spotlight with the Rare Disease Community! Learn more
Our Why
A Rare Disease is one that affects fewer than 200,000 Americans at any given time.
Approximate number of different rare diseases that collectively affect more than 30 million Americans.
of children with a rare disease will not live to see their 5th birthday.
of rare diseases affect children
Key Leadership
Current Chapter Leaders
Jack Maddox became a chapter leader at Clemson following the 2018 season. He has served as the Vice President before taking over as the President for the Clemson Chapter and assisted in landing NFL prospects to be part of Reps For Rare Diseases 2019 and helped oversee the Tigers’ Lift For Life that summer. Jack attended the Leadership Development Conference in January of 2019 and is making sure the defending Atlantic Coast Conference (ACC) champions use their platform as college football student athletes to serve and inspire hope in the Rare Disease Community.
A native of Acton, Mass., Jack is a senior long snapper for the Tigers who made his collegiate debut against NC State in 2018 and has appeared in 23 games for the Tigers. The former walk-on was awarded a scholarship prior to the 2020 season, and started all 12 games last year as the long snapper. He is majoring in political science and is a three-time ACC Honor Roll selection.
Vice President
Will Spiers has served the Rare Disease Community for four years in a leadership position for the Clemson Chapter. He took over as the Chapter President in 2019 after attending the Uplifting Athletes Leadership Development Conference in 2018 and 2019 and now is serving in the role of Vice President.
“Here at Clemson, one of our main focuses outside of football is to serve others. Working with Uplifting Athletes and Lift for Life is what it’s all about. We are honored to use our platform to make a difference, serve others, and create hope for the Rare Disease Community.”
Will is a former walk-on who earned a scholarship and is en route to becoming a five-year starter as the Tigers punter. He enters the 2021 season having averaged 41.4 yards on 229 career punts in 56 career games (all starts). His 56 career games played are already tied for ninth-most in school history. Will currently holds the Clemson school records for starts by a punter (56), career punts (211), punts downed inside the 20 (81) and total punting yards (9,483). In 2020 he was a Burlsworth Trophy semifinalist and an All-ACC Academic Team selection.
A former walk-on for the Tigers, the South Carolina native is the son of Clemson Hall of Famer Bill Spiers, who was the starting punter in 1986.
Jake Forschauer participated in several Lift For Life events before volunteering to become a chapter leader at Colgate. He attended the Leadership Development Conference in 2020 and 2021 and as a chapter leader plays a key and instrumental role in helping the Colgate Chapter continue its mission to inspire the Rare Disease Community with hope.
The senior, who hails from New Jersey, saw the first action of his Raiders career at quarterback in 2019. Froschauer appeared in four games, threw for nearly 200 yards and recorded the first touchdown of his career against Maine. He appeared in both games the Raiders played in the spring 2021 season.
Mailk Twyman volunteered to become a chapter leader after participating in Lift For Life events. He attended the Leadership Development Conference in 2020 and 2021 and as a chapter leader plays a key and instrumental role in helping the Colgate Chapter continue its mission to inspire the Rare Disease Community with hope.
The senior is a native of Philadelphia and has been a consistent running back for the Raiders, appearing in more than 30 games the last three seasons. Twyman eclipsed 1,000 career yards during the 2019 season with career highs in carries, yards and touchdowns. He finished the 2019 season with 461 yards and six touchdowns in 11 games and appeared in both contests the Raiders played in the spring 2021 season.
Tyler Phelps became the second generation of leadership for the Davidson Chapter after both co-founders graduated. Phelps has participated in both the Wildcats’ Lift for Life events and is motivated to help the cause. He attended the Leadership Development Conference in 2020 and 2021 and as a chapter leader played an instrumental role in 2020 Lift For Life that set a chapter record for fundraising in support of the Rare Disease Community.
The senior is a native of Florida and has been the Wildcats quarterback for the better part of three seasons with 25 starts in the last 28 games. Phelps started all 11 games in 2019 , throwing for 1,200 yards on only 71 completions with 12 touchdowns. He eclipsed 3,500 total yards for his career and was named to the Pioneer Football League Academic Honor Roll. In the spring 2021 season, he accounted for more than 800 total yards in guiding the Wildcats to a Pioneer Football League crown and a berth in the NCAA FCS Championships
Sean Holton is part of the second generation of leadership for the Davidson Chapter after both co-founders graduated. Sean has participated in all three of the Wildcats’ Lift for Life events and was motivated to help the cause. He attended the Leadership Development Conference in 2020 and 2021 and as a chapter leader played an instrumental role in 2020 Lift For Life that set a chapter record for fundraising in support of the Rare Disease Community.
The senior is a native of Georgia and has appeared in 27 games the last three seasons. After appearing in 11 games in 2018, Sean returned from injury in 2019 to play in the final 11 games including a pair of starts at safety. He was a PFL Academic Honor Roll selection in 2019. In the spring of 2021, he was part of the conference championship and NCAA Championships team.
When the FSU program went through a transition of leadership, DeCalon Brooks stepped forward and took on a leadership role in helping Uplifting Athletes remain a part of the Seminoles’ program. The Tampa native attended the 2019 Leadership Development Conference and was inspired by the rare disease cause and the programming to have an impact. In 2019, the Florida State held a Lift For Life after a one-year absence from the calendar, then in 2020 held a Touchdown Pledge Drive and Brooks, the President of the FSU Chapter, played an instrumental role in making both events to support the Rare Disease Community happen.
“Lift for life and Uplifting Athletes are a special part of Florida State Football. We are all about helping out those who are in need and kids that aren’t able to do the things that they desire. My teammates and I are proud to team up with Uplifting Athletes. We find it very fulfilling to raise money for research towards rare diseases. We are proud to help and be a part of tackling rare diseases.”
Brooks followed in the footsteps of his father, NFL Hall of Famer Derrick Brooks, by choosing Florida State. And the fourth-year player is making his mark. In 2018, as a redshirt freshman, he played in 11 games with seven starts, recorded 46 tackles including three tackles for a loss and one sack. In 2019 he played in 11 games and was nominated for the Wuerffel Trophy, and last season he appeared in all nine games for FSU recording eight tackles, two pass break-ups and returned a blocked punt 18 yards that set up a touchdown against No. 5 North Carolina.
Vice President
Keyshawn Helton is the cousin of FSU Chapter President DeCalon Brooks. He participated in the 2019 Lift for Life event and was a motivated leader in engaging his teammates to help support the cause. Keyshawn will play a key and instrumental role in helping the FSU Chapter continue its mission to inspire the Rare Disease Community with hope.
The junior appeared in 26 games the last three years including playing in all nine games for the Seminoles in 2020 after an injury limited him to nine games in 2019. He doubled as a wideout and kicker returner in 2020, recording a career-high 174 all-purpose yards and a touchdown in the win over Jacksonville State.
Jack Gildea stepped into a leadership role for the Fordham Chapter as a senior. He attended the Leadership Development Conference in 2020 and 2021 and, as a chapter leader, Jack will play a key and instrumental role in helping the Fordham Chapter continue its mission to inspire the Rare Disease Community with hope.
A native of Ohio, Jack appeared in 18 games the two seasons prior to the pandemic for Fordham as a back-up tight end and special teams player. He is a three-time Patriot League Academic Honor Roll selection.
Matt Dengler stepped into a leadership role for the Fordham Chapter as a senior. He attended the Leadership Development Conference in 2020 and 2021 and, as a chapter leader, Matt will play a key and instrumental role in helping the Fordham Chapter continue its mission to inspire the Rare Disease Community with hope.
A native of New Jersey, Matt plays linebacker for the Rams and is a two-time Patriot League Academic Honor Roll selection.
Jack DeFoor stepped forward as a leader to help the Georgia Tech program continue to make an impact serving the Rare Disease Community. Jack volunteered to assume a leadership role and attended the 2020 Leadership Development Conference. He is excited to help the Yellow Jackets’ program support the rare disease cause.
A native of Georgia, Jack transferred from Mississippi prior to the 2018 season and has appeared in 21 games along the offensive line for Georgia Tech. The former National Football Foundation Freshman Scholar Athlete has appeared in 25 games during his collegiate career.
Zach Quinney stepped forward as a leader to help the Georgia Tech program continue to make an impact serving the Rare Disease Community. Zach volunteered to assume a leadership role and attended the 2020 Leadership Development Conference. He is excited to help the Yellow Jackets’ program support the rare disease cause.
A native of Georgia, Zach became an impact player as a redshirt freshman in 2018 when he became the starting left tackle the second game of the season and never relinquished the job. He has made 24 consecutive starts the last two seasons at the anchor position up front.
President
Alex Palczewski played along the offensive line early in his career with former Illinois Chapter leader Nick Allegretti . He volunteered to step into a leadership role during his senior year. Alex attended the Leadership Development Conference in 2020 and 2021, and as the chapter President will play a key and instrumental role in helping the Illinois Chapter continue its mission to inspire the Rare Disease Community with hope.
The native of Illinois has started for the Fighting Illini since his true freshman year in 2017. Over the last four seasons, Alex had started 40 straight games including 29 in a row at right tackle before an injury ended his 2020 season. His 40 career starts is only eight shy of tying the school record. He was a third-team All Big Ten selection following the 2019 season and played in the first bowl game of his career.
Michael Marchese is the third member of his family to serve in a leadership role for an Uplifting Athletes chapter. His oldest brother Joe served as the Maryland Chapter President and older brother Jimmy served as an Illinois Chapter leader. Michael attended the Leadership Development Conference in 2020 and as a chapter leader will play a key and instrumental role in helping the Illinois Chapter continue its mission to inspire the Rare Disease Community with hope.
The native of Illinois started his career as a walk on for the Illini and has developed into a contributor on defense and special teams. He was awarded a scholarship during the offseason prior to the 2021 campaign. Over the last three seasons he has appeared in 27 games, making three starts at safety in 2018 and two starts as a linebacker in 2020. He’s registered nearly 50 tackles, a couple fumble recoveries and a pair of interceptions. Michael has a twin brother, Henry, who plays for the Iowa Hawkeyes.
Isaac Vance was a teammate of Antwan Dixon, the Kent State Chapter founder. Inspired by Antwan and his rare disease journey, Isaac chose to take on a leadership role after participating in the inaugural Kent State Chapter Lift For Life in 2019. Isaac attended the Leadership Development Conference in 2020 and 2021, and as the Kent State Chapter President will play a key and instrumental role in helping the chapter continue its mission to inspire the Rare Disease Community with hope.
The native of Las Cruces, New Mexico has played in 28 games over the last three seasons for the Golden Flashes as a slot receiver and on special teams. In 2020 he finished third on the team in receptions with 17 catches in four games. Isaac is a two-time member of the Academic All-Mac Team and was honored as the 2019-2020 recipient of the Lou Holtz Scholarship Endowment.
Alex Snyder has been an impact player on the field since he arrived at Lehigh and now is looking to make an impact serving the Rare Disease Community. Alex participated in the inaugural Lehigh Chapter Lift For Life in 2019 and volunteered to assume a leadership role. He attended the 2020 and 2021 Leadership Development Conference and is excited to help the Mountain Hawks’ program support the rare disease cause.
A native of Georgia, Alex was a three-sport athlete in high school and found the field immediately at Lehigh. The junior has appeared in all 25 games the last three seasons and in 2019 and the condensed 2020 season he started 14 straight games at tight end. Alex had his first 100-yard receiving game against Fordham in 2019 and over the last two seasons has averaged a stellar 14.5 yard per grab
Paul Olivett is a graduate of State College High School, home of Penn State University. He was familiar with Uplifting Athletes through the Penn State Chapter and its Lift For Life event and wants to use his platform as a college football player to make a difference at Marist. So the redshirt freshman contacted the Uplifting Athletes staff early in 2019 and worked hard to launch the Marist Chapter. In early May of that year, the Red Foxes held their inaugural Lift For Life.
“Starting an Uplifting Athletes chapter at Marist is an opportunity I couldn’t pass up. I’ve always wanted to get involved in the community and help those who need it and with Uplifting Athletes I believe that’s possible. Using the platform of Uplifting Athletes and the Marist Football team I hope we are able to continue the goal of spreading awareness and support for rare diseases. On behalf of Marist and the football team we cannot thank Uplifting Athletes enough and look forward to being a part of the many college teams tackling rare diseases.”
A third year player who will play safety after a standout high school career, Paul made his collegiate debut during the 2019 season and recorded his first tackle against Dartmouth. Marist did not have a 2020 season.
Vice President
Luke Paladino became an impact player for the Red Foxes in 2019 and now is looking to make an impact serving the Rare Disease Community. Luke participated in the inaugural Marist Chapter Lift For Life in 2019 and volunteered to assume a leadership role. He attended the 2020 and 2021 Leadership Development Conference and is excited to help the Marist program support the rare disease cause.
Originally from Rochester, New York, Luke took over the kicking duties as a redshirt freshman in ‘19 and delivered 61 points for the Red Foxes. He tied the program record with a 49-yard field goal, missed only three of his 14 attempts and nailed three field goals of 45 or more yards. Luke was a PFL All-Academic Honor Roll selection and was also a PFL honorable mention pick following the 2019 season. Marist did not have a 2020 season.
Jack Wagman is looking to make an impact serving the Rare Disease Community as a leader of the Maryland Chapter. He attended the 2020 Leadership Development Conference and is excited to help the Terrapins continue the program tradition of providing a voice for the rare disease cause.
Jack grew up a Maryland football fan in nearby Potomac and was a walk-on to the program. The two-time Academic All-Big Ten selection has seen action in three games over the last two seasons
Jake Funk is looking to make an impact serving the Rare Disease Community as a leader of the Maryland Chapter. He attended the 2020 Leadership Development Conference and is excited to help the Terrapins continue the program tradition of providing a voice for the rare disease cause.
The Maryland native saw action in 25 games his first two seasons, but has struggled to avoid injuries the last two years. The running back had nearly 200 rushing and a couple touchdowns in the first three games of the 2019 season before an ACL tear against Temple ended his season. Jake is a three-time Academic All-Big Ten selection.
President
Thomas Ruocchio has been part of the leadership team for the NC State Chapter since he was a freshman. He attended the Leadership Development Conference in 2017, 2018 and 2019. He worked his way up, learning the ropes of running an Uplifting Athletes Chapter, and is now the NC State Chapter President. He has a passion for the Rare Disease Community and has been instrumental in NC State’s success with Lift For Life, Touchdown Pledge Drive and landing NFL prospects to be part of Reps For Rare Diseases.
A native of Raleigh, NC who graduated from Cardinal Gibbons High School, Thomas was a walk-on tight end for the Wolfpack. He saw his first collegiate snaps in 2017 as a redshirt freshman and just prior to the 2019 season was awarded a scholarship. He has appeared in 25 games the last two seasons, including seven games where he saw snaps at tight end.
Dylan Autentrieth has been a driving force behind the success of the NC State Chapter for three years. He has helped organize and participated in three Lift for Life events and has attended the Leadership Development Conference twice. Dylan is passionate about servicing the Rare Disease Community and feels his work is making a difference.
After two seasons as a situational tight end for the Wolfpack, the Georgia native had moved up the depth chart and was named the starting tight end and team captain for the 2019 season. In only his third start, Dylan went down with a knee injury that ended his year. He was granted an extra year of eligibility and will return in 2020 to stake his claim for the No. 1 tight end spot again.
Peter Snodgrass has been inspiring the Rare Disease Community for more than three years in a leadership role for the Northwestern Chapter and is the Chapter President. Peter has been instrumental in continuing a strong tradition of outstanding football student-athlete leaders for the Wildcats. He attended the Leadership Development Conference in 2018 and 2019, learning to become a stronger voice and inspiration to the Rare Disease Community.
“Uplifting Athletes is the first time I have been able to use my voice as a student-athlete to help others. Watching my brothers rally around the Rare Disease Community is truly THE most inspiring experience I have had at Northwestern. As a leader of our chapter, I have seen first hand the value that my teammates and I can give to the Rare Disease Community.”
A native of Palo Alto, California, Peter was a four-year captain during his high school years and played linebacker, center and long snapper. The fourth-year player is a long snapper for the Wildcats and made his collegiate debut in 2019, appearing in three games. The economics major and former Eagle Scout and President’s Gold Award honoree for community service has a heart for giving back.
Joe Spivak joined the leadership team of Northwestern’s Uplifting Athletes’ Chapter in 2018, serving as the chapter Vice President in 2019. Joe attended the 2019 Leadership Development Conference and became passionate about the rare disease cause. He helped guide the Northwestern Chapter to successful Lift for Life events in 2019 and 2021. For his passionate work engaging with the rare disease patient community and his commitment to the cause, Joe was named to the 2020 Uplifting Athletes Rare Disease Champion Team.
”I love football... but even more than that, I love the relationships that football has brought into my life. I believe that Uplifting Athletes is extending these unbreakable bonds into a community that needs them more than ever,” Northwestern Chapter Vice President Joe Spivak said. “I think most of the guys all agree that the money we raise is awesome, but to be able to serve as an example and extension of FAMILY to these families is what is really awesome! Uplifting Athletes brings us all together on the same team.”
The defensive tackle saw action as a true freshman in 2017, appeared in 22 games the next two seasons as a back-up before becoming a starter the second game of the 2020 season during the Wildcats’ run to the Big Ten West title.
Drew White participated in the inaugural Notre Dame Chapter Lift For Life in 2018 and was inspired to take on a bigger role for the Fighting Irish. He volunteered to become a Chapter Leader and attended the Leadership Development Conference in January, 2019. Drew is motivated by the rare disease cause and wants to make a difference. He was instrumental in Notre Dame’s record-breaking Lift For Life in 2019 and is inspired to use his platform to give a voice to the Rare Disease Community.
A marquee linebacker recruit from St. Thomas Aquinas High School in Boca Raton, FL, Drew spent his freshman year on the scout team before appearing in four games and totaling eight tackles in 2018. Over the next two seasons, he started 25 games at linebacker for the Irish and recorded 136 tackles. Drew tied for the team lead in tackles with 80 in 2019 and posted a career-high nine tackles for a loss in 2020.
Vice President
JD Bertrand stepped into a leadership role for the Notre Dame Chapter after his first season with the Fighting Irish. He attended the Leadership Development Conference in 2020 and is motivated by the rare disease cause to make a difference and support the Rare Disease Community.
The linebacker from Georgia played four games on special teams for Notre Dame as a true freshman in 2019 and saw his first action at linebacker in 2020 with a pair of tackles in a victory over South Florida. JD appeared in eight games in 2020, including the College Football Playoff semifinal in the Rose Bowl.
President
Ben Padon made serious contributions up front on the offensive line in 2019, and now is looking to make an impact serving the Rare Disease Community. Ben participated in the Penn Chapter Lift For Life in 2019 and volunteered to assume a leadership role in the Penn Chapter of Uplifting Athletes. He attended the 2020 and 2021 Leadership Development Conference and is excited to help the Quakers’ program support the rare disease cause.
A native of Houston, Ben appeared in all 10 games on the offensive line for the Quakers in 2019 after appearing in only one game the previous two seasons. He was a two-sport athlete in high school, lettering in baseball for three years while also being a four-year letterwinner in football. Penn did not have a 2020 season.
Brian O’Neill has been an impact player on the field the last two seasons (2018, 2019) for Penn and now is looking to make an impact serving the Rare Disease Community. Brian participated in the 2018 and 2019 Lift For Life events as part of the Iron Quaker and volunteered to assume a leadership role in the Penn Chapter of Uplifting Athletes. He attended the 2020 and 2021 Leadership Development Conference and is excited to help the UPenn program support the rare disease cause.
A native of New Jersey, Brian started 10 games in 2018 and 2019 at linebacker and in 2019 was a second team All-Ivy selection. He led the Quakers in interceptions in 2019 with three and the last two seasons as a starter has registered more than 110 tackles and 20-plus tackles for a loss. Penn did not have a 2020 season.
Chris Stoll takes over the role of Penn State Chapter President after serving two years in other leadership roles. He has become an impact player for the Nittany Lions, serving as the starting long snapper the last two seasons, and now is looking to make an impact serving the Rare Disease Community. Chris participated in the Penn State Chapter Lift For Life in 2017, 2018 and 2019 and volunteered to step into the high profile leadership role. He attended the 2019, 2020 and 2021 Leadership Development Conference and is excited to help the Penn State program continue its long standing tradition of supporting the rare disease cause.
A native of Ohio, Chris made his first collegiate start in 2019 when he took over the Penn State long snapper duties while also serving as the holder for the Nittany Lion kickers. He appeared in all 13 games and made a memorable open-field tackle on special teams in the Michigan game. In 2020, he appeared in all nine games running his starting streak to 22 consecutive outings.
Joe Calcagno is putting in his time as a reserve long snapper and holder, and now is looking to make an impact off the field serving the Rare Disease Community. Joe has participated in three Penn State Chapter Lift For Life events and volunteered to assume a leadership role. He attended the 2020 Leadership Development Conference and is excited to help the Penn State program support the rare disease cause.
Originally from Illinois, Joe is a two-time Academic All-Big Ten selection who is providing comfortable depth for the Nittany Lions at the long snapper position. He has aspirations to be an orthopedic surgeon and was a two-time captain of his high school team in the Chicago Catholic League.
Luke Aschenbrand is a third-year player from Arizona who attended the Leadership Development Conference in 2019 and immediately wanted to become heavily involved in using his platform to support the cause. So Luke took over as the President of the Princeton Chapter and guided the Tigers through Lift For Life in 2019 and again attended the Leadership Development Conference in 2020 and 2021.
“Uplifting Athletes has given me a humbling and incredible opportunity to help give back to the community. Meeting rare disease patients who appreciate the effort we put in and are thankful for the outreach of their message makes what I do worth it.”
A two-sport athlete coming out of high school, Luke played multiple positions on both sides of the ball for his high school team and is projected to be an offensive lineman at Princeton. Princeton did not have a 2020 season.
Harrison Caponiti is looking to make an impact serving the Rare Disease Community. Harrison participated in the Princeton Chapter Lift For Life in 2019 and volunteered to assume a leadership role. He attended the 2020 and 2021 Leadership Development Conference and is excited to help the Tigers’ program support the rare disease cause.
A native of Rye, New York, Harrison was a three-sport athlete in high school playing football, lacrosse and baseball. The tight end appeared in all 10 games in 2019 and also recorded his first career tackle on special teams. Princeton did not have a 2020 season.
President
Shaun Hastings has become a mainstay and leader on the offensive line for Saint Francis and now is looking to make an impact serving the Rare Disease Community. Shaun participated in the Saint Francis Chapter Lift For Life in 2018 and 2019 and volunteered to assume a leadership role. He attended the 2020 Leadership Development Conference and is excited to help the Red Flash program support the rare disease cause.
A Pennsylvania, Shaun was an All-State player in high school and, as a redshirt freshman in 2018, he appeared in eight games along the offensive line. Last season he became the starting right tackle and made nine starts.
Dom Clark became a regular on the field in 2019 and now is looking to make an impact serving the Rare Disease Community. Dom participated in the Saint Francis Chapter Lift For Life in 2018 and 2019 and volunteered to assume a leadership role. He attended the 2020 and 2021 Leadership Development Conference and is excited to help the Red Flash program support the rare disease cause. Dom served in a key leadership role for the 2021 Saint Francis Chapter Lift For Life.
A native of Maryland, Dom, a three-sport athlete in high school, played in all 12 games in 2019 for the Red Flash, primarily as a tight end. The redshirt junior recorded his first points by hauling in a two-point conversion and also made his first official catch against Bryant. Saint Francis did not have a 2020 season.
Regan Craig is an Academic Honor Roll selection looking to make an impact serving the Rare Disease Community. Regan participated in the Stony Brook Chapter Lift For Life in 2019 and volunteered to assume a leadership role. He attended the 2020 and 2021 Leadership Development Conference and his leadership played a key role in Stony Brook holding a successful 2020 Lift For Life in support of the rare disease cause.
A native of New York, Regan is a redshirt junior who has moved up the depth chart and is looking to make his collegiate debut on the offensive line. Stony Brook played only four games during the 2021 spring season.
Kyle Nunez has been an impact player on the field the last three seasons for Stony Brook and now is looking to make an impact serving the Rare Disease Community. Kyle participated in the Stony Brook Chapter Lift For Life in 2019 and volunteered to assume a leadership role. He attended the 2020 and 2021 Leadership Development Conference and his leadership played a key role in Stony Brook holding a successful 2020 Lift For Life in support of the rare disease cause.
A native of New York, Kyle has played in 28 straight games at right guard for the Seawolves including 21 starts up front. Following the 2021 spring season, Kyle earned first-team All-CAA and AFCA FCS Coaches’ All-America second team.
Aaron Bolinsky has been an impact player on the field since he arrived at Syracuse and now is looking to make an impact serving the Rare Disease Community. Aaron participated in the Syracuse Chapter Lift For Life in 2018 and 2019 and volunteered to assume a leadership role. He attended the 2020 and 2021 Leadership Development Conference and is excited to help the Orange program support the rare disease cause.
A native of Pennsylvania, Aaron stepped in right away and took over the long snapper duties as a true freshman in 2018. After never missing an offensive snap in four years of high school, Aaron has made 30 consecutive starts and has contributed four tackles on special teams for the Orange. Last season marked the third consecutive year Aaron has snapped for an All-American specialist.
Cooper Dawson has a strong connection to the Rare Disease Community. When he made his college choice, Cooper invited his good friend, who is a rare disease patient, to help make the announcement. Cooper participated in the Syracuse Chapter Lift For Life in 2019 and volunteered to assume a leadership role. He attended the 2020 Leadership Development Conference and is excited to help the Orange program support the rare disease cause.
A native of South Carolina, Cooper was a two-sport athlete in high school who missed his senior year of football with an injury. The defensive lineman took a redshirt in 2019 as a freshman.
Zaire Barnes is part of the second wave of leaders for Western Michigan Chapter after co-founders Jamauri Bogan and Justin Tranquill move on. He joined the leadership team at WMU after his 2018 freshman season and attended the Leadership Development Conference. Holding a Lift For Life is an important big step for a new chapter, and Zaire served as chapter Vice President when the Western Michigan Chapter held its inaugural signature event to inspire the Rare Disease Community with hope.
A native of Illinois, Zaire appeared in all 13 games for the Broncos as a true freshman in 2018 and made 11 starts at linebacker in 2019. He recorded his first tackle for a loss in 2019 and finished with a career-high 29 tackles for the season. Projected to start again in 2020, Barnes suffered an injury and was unable to play for the Broncos in the spring 2021 season.
Jake Moertl found the field early in his Broncos career and is now looking to make an impact serving the Rare Disease Community. Jake participated in the inaugural Western Michigan Lift For Life in 2019 and volunteered to assume a leadership role. He attended the 2020 and 2021 Leadership Development Conference and is excited to help the Western Michigan program support the rare disease cause.
A native of Illinois, Jake has appeared in 23 games as a safety his first two years at Western Michigan. He is a key reserve at safety and plays a pivotal role on special teams. Jake has six tackles and has logged nearly 275 career snaps for the Broncos.
Ben Solomon stepped forward as a leader to help the Eastern Illinois program continue to make an impact serving the Rare Disease Community. Ben volunteered to assume a leadership role and helped EIU hold its inaugural Lift For Life in 2019 and attended the 2021 Leadership Development Conference. He was instrumental in helping EIU wear Uplifting Athletes helmet stickers for its game in the spring of 2021 on Rare Disease Day.
A native of Indianapolis, Ben made his college debut in 2018 as a redshirt freshman when he appeared in 10 games on special teams. In 2019, he became a regular along the offensive line. Ben appeared in 11 games, made six starts at center and one at left guard.
Staff
A suburban Philadelphia native, Rob is a former All-American punter at Syracuse and has lived the rare disease journey. In December of 2010, late in his senior season, Rob was diagnosed with anaplastic astrocytoma, a rare and aggressive form of brain cancer. His prognosis at the time was less than encouraging, and his surgery, recovery and treatment took 16 months. Prior to his diagnosis, Rob was on a path to the NFL as a punter, but that opportunity was lost by the time he was healthy enough to train again. A graduate of Syracuse University, Rob pursued a Masters in New Media Management from the S.I. Newhouse School of Public Communications. He also received a B.S. from the Martin J. Whitman School of Management.
Rob played football all four years for the Orange and was voted team captain by his teammates his final two seasons. He became the second Executive Director of Uplifting Athletes at the end of 2018. Prior to taking over as the Executive Director, Rob served as Uplifting Athletes' Director of Rare Disease Engagement for nearly two years. Rob has a steadfast commitment and connection to the Rare Disease Community as a rare brain cancer survivor . As a former star college football student-athlete, his passion and drive to advance the mission of Uplifting Athletes is inspirational. Rob and his wife, Irie, reside in suburban Philadelphia with their dog Winston.
The New Jersey native has an innate passion for helping others and directs that passion towards the Rare Disease Community and using the platform of sport for social good. Brett proved to be an exceptional athlete as he transitioned from a top-rated quarterback in high school to a standout wide receiver at Penn State then to a tight end in the NFL. A four-time Academic All-Big Ten selection for the Nittany Lions, Brackett graduated with a double major in Marketing and Economics. He was the President of the Penn State Chapter of Uplifting Athletes and was voted as a co-captain of the team his senior year.
On the field he played in 52 straight games and averaged 12.8 yards per catch with seven touchdowns. Undrafted out of college, he still made it to the NFL with stops in Miami, Philadelphia, Jacksonville, Tennessee and Seattle before his playing career came to an end. Brett and his wife Jamie have two children. Currently, Brett serves the Rare Disease Community as Uplifting Athletes General Manager and Director of Sports Impact
Like many coaches’ kids, Levi does not consider one place home but currently resides in Waco, Texas. Levi is a former student-athlete at Baylor University where he played football and basketball. While at Baylor, he developed a relationship with a local high school student battling Cerebral Palsy and, in the Spring of 2014, founded the Baylor Uplifting Athletes Chapter. And in 2015, he was an Uplifting Athletes Rare Disease Champion Award finalist.
Levi was a part of the winningest class in Baylor football history and helped the school win its first two Big 12 Conference Championships in 2013 and 2014. As the primary punt returner, he holds the school record in career punt return touchdowns (2) and as a receiver caught 128 passes with 11 touchdowns. He also has one career point for the Baylor University basketball team.
Following Baylor, Levi spent a short time in the NFL with the Chicago Bears and the Pittsburgh Steelers, then returned to Baylor to receive his Masters in Sport Management. Levi serves the Rare Disease Community as Uplifting Athletes’ Chapter Success Manager.
Born in China, Aimei was adopted when she was several months old and grew up in Woodstock, New York. An only child, Aimei was lucky enough to travel a lot growing up and that included attending Penn State football games with her parents from the time she was 10 years old. It was no surprise when it came time to choose a college, Aimei became a Penn Stater and graduated in 2017 with a B.S. in Psychology. She’s currently working on her M.S. in Higher Education Administration with plans to graduate in May 2022.
Professionally, she started as a preschool teacher at Penn State before moving to Boston to become the Community Development Manager at the American Cancer Society and most recently served as the Manager of The Longest Day for the Massachusetts/New Hampshire Chapter of the Alzheimer’s Association. Nonprofit work allows Amiei the ability to provide opportunity to those who want to be involved in a cause that is important to them, and gives her a sense of purpose each day. Familiar with Uplifting Athletes from her days at Penn State, Aimei is excited to serve the Rare Disease Community. Aimei recently relocated from Boston and lives in New Jersey with her partner.
A military brat who lived all over the world for three decades of his life, Andy came to Uplifting Athletes full-time in 2014 after 18 months working part-time. Prior to joining Uplifting Athletes he was a sportswriter for PennLive/The Patriot-News for more than 20 years covering high school football, golf, college football recruiting and basketball. Andy is also an Army combat veteran, serving in the 2nd Armored Cavalry Regiment during Operation Desert Storm.
He has been married to Maureen for more than 25 years and has two grown children, Kaci and Brendan. Andy serves the Rare Disease Community by connecting his sportswriter background to developing communications aimed at fulfilling the mission of Uplifting Athletes
Although John grew up in upstate New York, he considers State College, Pa. his home. John earned both an undergraduate and a Masters of Business Administration degree from Penn State University. He worked for more than two decades for a multi-national company with its World Headquarters in State College. He joined that organization in its relative infancy, and after leading the growth of the Sales and Marketing functions globally, retired from the organization in 2016. John was a member of the inaugural Executive Team at the organization.
Although not a collegiate athlete, John has always participated in sports and has a devotion to sports and what sports can offer any individual. Being able to maximize the benefit of sport to help others is a rewarding challenge that John has been dedicated to and actively engaged in with Uplifting Athletes since his retirement when he took on the role of Business Manager
Board
Scott is the founder of Uplifting Athletes and served the 30 million Americans that comprise the Rare Disease Community as the Executive Director from when he launched Uplifting Athletes as a national nonprofit in 2007 until December, 2018.
Uplifting Athletes was built on Scott’s rare disease journey that started in 2002 when his father, Don Shirley, was diagnosed with kidney cancer. When Scott’s Penn State football teammate, Damon Jones, learned of the challenges the Shirley family was enduring, he suggested that they do something since they were in a position to shine their spotlight on those who needed a voice.
The Penn State football team rallied around the idea of leveraging a summer strength and conditioning competition into a fundraising event called Lift For Life®.
After graduating from Penn State with a B.S. and Masters degree in Engineering, Scott held his “dream job” as a Project Engineer with Clark Construction Group in Washington D.C. He didn’t envision leaving that job so soon, but when Uplifting Athletes started to take off, Scott quit his job and started a full-service nonprofit.
Scott also founded a sports inspired for-profit company in 2015 called PledgeIt and is currently the Chief Executive Officer (CEO) responsible for strategic planning, investor relations and daily operations.
The Central Pennsylvania native is married to Stephanie, has two children and in his spare time serves on the AmeriChoice Federal Credit Union Board of Directors, is a member of the Board of Directors at his church and is also a Kellogg Executive Scholar in Nonprofit Management.
Keith is a graduate of Penn State University and has served as President of the Board of Directors since 2012. He helped guide Uplifting Athletes through an updated and innovative business model and business plan change in 2016 and, in 2018, provided key leadership during the Executive Director transition.
Keith is the Co-Founder of Mediabarn in Arlington, Virginia, a company that specializes in UX research, design, and staff augmentation. As CEO and Co-Founder, he has led Mediabarn through more than a decade of success. He has helped build the organization into an interactive powerhouse with a wide range of clients including government agencies, such as the U.S. Army, U.S. Patent Office and National Institute of Health (NIH), to some of the world’s most widely recognized media and education brands including: Discovery Communications, National Geographic, The Better Business Bureau, PBS, K12, and Pearson Education.
He started his interactive career at America Online, spending 10 years there during a significant period of growth from 1994 to 2004. Keith worked his way up to become the Executive Director of the Producer Team in the AOL Studio for more than two years. The Producer Team was responsible for project managing the user experience design and production of nearly all of the AOL properties, giving Keith wide exposure to all facets of creating and running interactive products.
Keith continues to stay plugged into his alma mater, assisting the College of Information Sciences and Technology as a speaker in project management and entrepreneurship. In his spare time Keith enjoys traveling, cooking, playing bass in a band and treats going out to dinner like an extreme sport.
Dave has served on the Uplifting Athletes Board of Directors since the organization was launched as a national non-profit in 2007. He was also instrumental in crafting the initial business plan for Uplifting Athletes with Founder Scott Shirley.
Early in 2019, Dave became a faculty member at the Penn State Bellisario College of Communications where he teaches courses in advertising. Prior to that he served as vice president of advertising and sponsorships for Lincoln Financial Group. During his 15-year tenure at Lincoln Financial, he was responsible for a wide array of initiatives that were designed to build a strong Lincoln Financial Group brand. Dave was also responsible for overseeing Lincoln’s long, successful partnership with the Philadelphia Eagles, including the development of experiential programs as the naming rights partner for Lincoln Financial Field.
Dave served as Director of Advertising from 1998-2003 at the Principal Financial Group in Des Moines, Iowa, spent 10 years at N.W. Ayer & Partners in Detroit, Michigan where he was the account director on the General Motors brand advertising program and was also the advertising manager at Barnett Banks of Florida, Inc.
He is an active member of the Financial Communications Society, the Association of National Advertisers, and serves on the executive committee for the Conference Board Council on Corporate Brand Management and Strategy.
A native of Harrisburg in Central Pennsylvania, Kerwin joined the Uplifting Athletes Board of Directors in 2012 and serves as Treasurer.
Kerwin is very involved as a servant to other community organizations in the greater Harrisburg area. Since 1999 he has been the Treasurer and a member of the Board of Directors for Salt ‘N Light Youth Ministry, was on the Board of Directors for the West Shore Chamber of Commerce for more than a decade, including a two-year stint at Board Chair, and since 2016 has been Chairperson of the Board of the United Methodist Home for Children. He also served as Treasurer for his church for nearly 15 years and for the last six years has served on the Community Advisory Committee for a Continuing Care Community.
Since 2003, Kerwin has worked for Pyramid Construction, a commercial general contractor, serving as the Chief Financial Officer (CFO). Prior to joining Pyramid Construction, the Roanoke College graduate spent 14 years as a Vice President and Controller for another commercial general contractor; worked as a controller for two other Central Pennsylvania companies through most of the 1980s and started his career as a Senior Accountant with Price Waterhouse & Co. in Nashville, Tennessee.
Scott joined the Board of Directors in 2019 to provide leadership and guidance to grow the overall impact of Uplifting Athletes - particularly in the rare disease research space. The University of Colorado at Denver and University of Utah School of Medicine graduate has a strong and proven record of successful non-profit board service.
A resident of Seattle, Scott was elevated to his current position as Senior Vice President, Center for Rare Diseases at PRA Health Sciences in early 2018. Prior to that he spent four years as Vice President, Scientific Affairs - Rare Diseases for PRA Health Sciences where he was instrumental in creating the Center For Rare Diseases, a multidisciplinary business unit focused on innovative approaches to overcome the challenges of research in rare disease populations.
Before joining the PRA team in 2012, Scott spent four years with Cancer Research and Biostatistics (CRAB) as the Chief Operating Officer (COO), three years with MedSource as its Vice President, Strategic Business Development, two years as Director, Business Development for PRA International and from late 2000 until April of 2003 was the Clinical Operations Manager at Seattle Genetics, Inc.
Scott has previous non-profit Board of Directors experience with the Leukemia and Lymphoma Society, Gage Academy of Art, Lawton Wood Community and Bike Works. He’s a member of DIA’s Rare Disease Program Committee and ISCTM’s Orphan Disease Working Group and has spoken at a plethora of professional conferences including World Orphan Drug Conference, National Organization for Rare Disorders (NORD) and MassBio.
