2020 Rare Disease Champion Team: Learn more about Northwestern defensive tackle Joe Spivak and what his inspiration means to a rare disease patient


Joe Spivak

University: Northwestern University

Vitals: 6-0, 300 pounds, senior, defensive lineman

Quick Hits: 2020: A natural leader, Joe was a three-time captain in high school, becoming the first sophomore football player chosen as a captain at Esmark High School in Chicago. Joe has appeared in 36 games for the Wildcats since his true freshman year in 2017, including 22 the last two seasons. He made his first career start at defensive tackle against Iowa in the second game of the 2020 season and went on to start the next nine games for the Wildcats during their run to a Big Ten West crown and a second appearance in the conference title game in the last three years. In the Citrus Bowl victory over Auburn, Joe notched his first career solo sack. The two-time Academic All-Big Ten selection is a leader on so many fronts, and has brought his intense passion and purpose to the Rare Disease Community by serving as a leader in the Northwestern Chapter of Uplifting Athletes since 2018. He continues to serve as the Vice President of the chapter and is using his platform to make a difference in the lives of patients across the country.

RARE IMPACT FROM THE VOICE OF A RARE DISEASE PATIENT

“The week Northwestern football was preparing for its 2020 Big Ten Championship game against Ohio State I was getting some surprising and devastating news, I stopped responding to treatments.

This is one of every rare or chronic illness patient’s worst fear. We have so little options to begin with that we consider it almost a miracle when something works. So, to hear that my already limited pool of therapeutics had shrunk further was a true gut punch. But I was really looking forward to the game. It had now become not only a chance to root for my team, but a much-needed distraction.

It was Thursday of championship week and my phone rings. On the other end is none other than a couple of Northwestern players I have come to admire, Joe Spivak and Pete Snodgrass. They were checking in with me, to see how I was doing.

When I assured Joe that if they were busy, they could put off the call until after the season he told me, “Marni, we will always find time to talk to you.” I bet you are wondering what ultra-inspiring conversation we had?

We talked about smoking meat. Yup, that is right we talked about different types of smokers and what meats you can use them for. We also talked about future goals, but mostly, smoking meats.

Why do I share this? It’s simple, it shows two sides of Joe Spivak. The side that puts other people first and made sure that the week of his big game a rare disease patient knew she was still thought of, and the side that is just genuine and has you laughing so hard as he ponders what meat he can come up with to try and smoke.

In the Rare Disease Community, we are used to people caring about us who have a connection to the space. But I met Joe when he reached out to me, a total stranger, to learn about the rare disease experience.

When he realized how I was struggling, he kept that relationship going and encouraged me to push past the shadows and to fight the disease consuming my body. He never once gave up on me and made me realize I am more than this disease. With his support I took the steps to see what my body really was capable of.

I started working with a physical therapist and strength coach and the girl who couldn’t walk around the block without her cane can now jog. I was told by several doctors to accept that my arm was a loss, the disease too far gone in ravaging it. Before the Wildcats’ 2020 season I couldn’t lift it past shoulder height and that was with excruciating pain. Now, I have close to full range. 

Sometimes there are so many voices in the world telling you “you can’t” it becomes suffocating. Hearing a stranger tell you “I believe you can”, can be the most powerful tool you have.

It becomes the voice that echoes in your mind when you have those “bad” disease days, curled up in a ball on the floor screaming in pain. It becomes the words that get you through the doctor’s appointments where they tell you news you were dreading, and it becomes the voice you make the loudest when those other voices begin to bombard you.

Joe Spivak is whose voice is in my head.”

Marni Cartelli

WHAT THEY SAID

“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. To be able to serve as an example and extension of family to rare disease patients and families is what is really awesome!” – Joe Spivak

2020 Rare Disease Champion Team: Learn more about Austin Peay defensive lineman Josephus Smith’s rare courage and commitment


Josephus Smith

University: Austin Peay State University

Vitals: 5-9, 285 pounds, senior, defensive tackle

Quick Hits: Josephus had a breakout 2019 in his second season with APSU after transferring from Miles College in Alabama. The three-time member of the Athletic Director’s Honor Roll earned first-team All-Ohio Valley Conference honors after posting 18.5 tackles for a loss. He at least assisted on one tackle for a loss in nine of the 15 games that season. Josephus was a big part of APSU winning its first Ohio Valley Conference title since 1977 and the Governors went on to play in three FCS playoff contests with Josephus registering five postseason tackles. APSU played only three games in 2020 before COVID-19 issues scuttled the season. Josephus picked up right where he left off, registering seven tackles, one sack, one tackle for a loss and a forced fumble in only two games. Josephus and his wife, Shermiria, welcomed their second daughter to the world in May of 2020 at the height of the pandemic. Madison was born premature with Congenital Diaphragmatic Hernia (CDH), a rare abnormality that happens to 1 in 2500 babies. The struggles and battles the Smith family has endured during their journey to save the life of their child, trying to stave off a deadly rare condition is what every parent would do. For Josephus and Shermiria to continue their educations and his football career has been a challenge unlike any other.

INSIDE THE RARE JOURNEY

Coming off his best season as a college player in 2019, Josephus Smith was firing on all cylinders. The bulky defensive tackle was fulfilling his dream of playing Division I football when so many told him he couldn’t because of his size. He married his high school sweetheart, Shermiria, and the Smith’s were on the cusp of welcoming their second daughter into the world in 2020.

The road to becoming a first-team All-Ohio Valley Conference selection, Athletic Director’s Honor Roll student, loving husband to Shermiria and proud father was full of hard times and tough decisions.

Little did the Smith’s know that football, college degrees and even the near future were about to take a back seat. Those tough times and difficult decisions they already endured were about to serve them well.

In February, when the Smith’s were about to find out the gender of their second child, they were told unborn daughter Madison had Congenital Diaphragmatic Hernia (CDH), a rare abnormality that happens to 1 in 2,500 babies.

CDH is a condition present before birth characterized by abnormal development of the diaphragm. The severity of CDH may range from a thinned area in part of the diaphragm, to its complete absence. CDH may allow the stomach and intestines to move through an opening (hernia) into the chest cavity, crowding the heart and lungs. This can then lead to underdevelopment of the lungs, which may cause life-threatening complications.

The Smith’s immediately started doing research on the rare disease to find out the best information and resources available for them to make the best decisions possible for Madison.

Already facing a 50 percent chance of survival before being born, Madison’s odds became even longer when at 29 weeks Shermiria developed severe preeclampsia. The best solution for Shermiria was to deliver Madison as soon as possible.

At 29 weeks, though, for a baby with CDH, Madison would be too small to go on Extracorporeal Membrane Oxygenation (ECMO), which would greatly increase her chance of living.

The Smith’s found a CDH Facebook group and learned more about a doctor in St. Petersburg, Florida who was having a 95 percent success rate with CDH babies.

They prayed, talked to family and friends and decided heading to Florida to seek out Dr. David Kay would give their daughter the best chance for survival. In the middle of the pandemic, with Shermiria suffering from severe preeclampsia, the Smith’s risked everything. Football career, college degrees, a mountain of medical bills – none of it mattered to Josephus.

His wife, daughter and family came first and that was priority No. 1. He would sort out the details of everything else later. 

Ten days after arriving in Florida, Madison was born on May 20th at nearly 33 weeks. Six days later she had her first surgery and remained hospitalized until late July.

The fight will continue for Madison. Children born with CDH can have issues into infancy. 

Bills have piled up at home and in Florida. Josephus and Shermiria are two college students with a family trying to make it work on a limited budget. To give Madison a fighting chance they had to take on the debt.

Their situation is unique and inspiring. The NCAA has approved a fundraising campaign to support the Smith family that in no way impacts Josephus’ eligibility. Click here to support the Smith family. 

WHAT THEY SAID

“It was tough having to be in Florida, seeing Madison struggle with tubes in her and crying. We couldn’t pick her up or comfort her. It was pretty tough as parents seeing her going through that. It’s been tough because you don’t really know what’s next.” – Josephus Smith

2020 Rare Disease Champion Team: Learn more about Stanford head coach David Shaw and the rare bond with his younger brother


David Shaw

University: Stanford University

Vitals: Head Football Coach

Quick Hits: The 1995 Stanford graduate is the fifth alum to hold the position of head football coach. David is the 34th head coach in program history and just completed his 10th season at his alma mater. He is the winningest coach in program history with a 90-36 (.714) career record including 62-25 (.713) in Pac-12 play. David has guided Stanford to three Pac-12 titles since he took over in 2011 and a pair of Rose Bowl wins in three appearances. David, who oversaw the final nine years of the 2010s, was instrumental in Stanford’s most successful decade in school history. The Cardinal totaled 98 wins, 42 NFL Draft picks, 28 wins vs. AP Top 25 teams, 24 AP All-Americans, nine Academic All-Americans, five unanimous All-Americans and had a 93.5 average graduation success rate. Each of those categories either led the Pac-12 or was second, while also in the Top 10 nationally. He launched his coaching career at Western Washington, where he coached outside linebackers in 1995 and tight ends in 1996. David’s coaching resume also includes nine years of NFL experience and four years as Stanford’s offensive coordinator before taking over as the head coach. A four-year letterwinner at Stanford from 1991-94 as a receiver, Shaw was a member of Stanford’s 1991 Aloha Bowl team coached by Dennis Green that finished the season 8-4 and was also on the Cardinal team that went 10-3 and won the 1993 Blockbuster Bowl under Bill Walsh. Shaw finished his Stanford career with 57 catches for 664 yards and five touchdowns. Born in San Diego, David and his wife, Kori, are the parents of three children — Keegan, Carter and Gavin.

INSIDE THE RARE JOURNEY

Coach Shaw knew his younger brother Eric’s battle with an extremely rare and aggressive form of skin cancer was in the final stages. After nearly seven years of radiation, chemotherapy and two failed bone marrow transplants nothing helped. With each failed potential treatment protocol the cancer came back with even greater fury and ferocity.

Coach Shaw and Eric didn’t directly mention what was happening late in 2017 and early 2018 but deep down both knew. Eric was dying. And Coach Shaw, as the big brother, was desperate to find a solution that would give his brother a chance at life.

It took two years for doctors to properly diagnose Eric in 2013 with a rare form of skin cancer called mycosis fungoides, a type of T-cell lymphoma that affects one in 6 million people in the United States and Europe.

After two years of battling as the disease progressed, Eric still didn’t fully grasp the brevity of his situation until the doctors bluntly told him his rare disease was so aggressive he needed to start treatment immediately. Radiation first. If that didn’t work chemotherapy would be next. Eight months of treatments didn’t produce any results and so it was down to the last-resort: a bone marrow transplant.

However, two failed bone marrow transplants in a five-month span left Eric seven years into his fight and it appeared no more viable options remained. 

One final risky option was discussed by the doctors and it involved Coach Shaw. For more than a quarter century doctors had worked on a half-match transplant without much success. By 2018 a new option had become available to try this type of transplant called haploidentical transplants and typically you used the bone marrow of a family member.

Coach Shaw was only a five on the match scale out of 10 when he was originally tested. But this was desperation time and the doctors wanted Coach Shaw to be the donor.

Eric and Coach Shaw agreed it was worth the risk. If they did nothing the disease would come back stronger again and take Eric’s life. The odds, 30 to 40 percent, seemed pretty good compared to the alternative.

Quietly and without saying anything about what was going on, Coach Shaw prepared for the transplant while continuing to coach his team that year. It took an enormous physical toll on him, but it was nothing compared to what Eric had already faced. After 27 grueling days of recovery, Eric and Coach Shaw received a call they didn’t expect but quietly prayed and hoped they would receive. The transplant worked. All the blood in Eric’s body belonged to his brother, Coach Shaw.

In early 2019 Eric was declared cancer free and doctors say the chance of his rare condition returning are less than one percent. The Shaw brothers shared their rare disease journey publicly for the first time in 2020 to inspire others with hope.

WHAT THEY SAID

“I had a rare disease, battled it together with David and my family for a long time. Ultimately, David became my bone marrow transplant donor and he is the reason I am here today because he saved my life. Thank you, David.” – Eric Shaw

2020 Rare Disease Champion Team: Learn more about Syracuse quarterback Rex Culpepper overcoming his rare cancer battle to shine on the field


Rex Culpepper

University: Syracuse University

Vitals: 6-3, 221 pounds, senior, quarterback

Quick Hits: A native of Florida who has a vast arsenal of talents and interests off the field, Rex persevered to become the Orange starting quarterback the second half of the 2020 season. The three-time ACC Honor Roll and seven-time SU Athletic Director’s Honor Roll selection made five starts at quarterback, threw for more than 1,000 yards with nine touchdowns and produced a memorable moment with a celebration of his first touchdown pass in more than three seasons. Diagnosed with a rare form of testicular cancer prior to the 2018 season, Rex came back to become one of 10 nominees for the inaugural Jim DaRin Courage Award and was a finalist for the 2018 Orange Bowl-FWAA Courage Award.  He layed quarterback, tight end and was an up blocker in kickoff coverage during his colorful Orange playing career. Some of his off-the-field hobbies include playing the guitar and piano, repairing motorcycles and, during COVID-19 lockdown, he learned the ins and outs of the stock market. Rex owns the Syracuse record for most passing yards by a quarterback in his first start when he threw for 280 yards against Boston College in 2017.

INSIDE THE RARE JOURNEY

There isn’t much conventional about the Syracuse quarterback from Florida whose father played in the NFL for nearly a decade and whose parents, Brad and Monica, have been contestants multiple times on the reality television show “Survivor”. Rex, like his parents, is a multi-talented free spirit with the fight and determination of a badger when facing adversity.

Rex lost his senior year of high school to a torn ACL suffered during a 7-on-7 workout during the summer and missed his redshirt sophomore year at Syracuse in 2018 after being diagnosed with testicular cancer in March of that year.

The type of cancer Rex endured is considered rare but is very treatable. He was very open about his diagnosis and inspired others with hope by sharing his journey publicly. He had a 98 percent cure rate diagnosis, attacked his 100 hours of chemotherapy with confidence in his ability to battle. Three weeks into his 10-week treatment protocol he returned to Syracuse for spring practice and threw a 17-yard touchdown pass in the Orange spring game.

Three days later he had a major scare that hammered home the brevity of what he faced despite the odds being in his favor. Rex had an allergic reaction to a mixing agent used in his treatment that had doctors rushing to his side. Later he told his teammates at an SU awards celebration that at that moment he thought his “life was out of my control.”

Rex did return to play the 2018 season, but not at quarterback. He switched positions to tight end and his only game action was on special teams as a wedge blocker on kickoffs.

During his grind to stay involved in football, Rex continued to inspire other patients in Central New York and beyond with his incredible commitment. His story gained national attention and would resurface nationally in 2020.

In Week 2 at Heinz Field in Pittsburgh, Rex was called to take over under center against the Pitt Panthers. On his second snap, Rex snared the shotgun snap, twirled the ball in his hands and let fly a perfect strike downfield to wide receiver Taj Harris perfectly in stride. The 69-yard connection was the first touchdown pass Rex had thrown for Syracuse since his battle with cancer and his first since 2017.

Three long years of euphoria was let loose by Rex in that moment as his wild and emotional celebration was pure unvarnished joy being unleashed. The celebration clip went viral and so did his comeback story and the battle he endured to get to that moment.

Being back in the spotlight allowed Rex to continue to use his platform and share his updated story in order to serve as an inspiration for others. He ended up playing 10 games at quarterback in 2020 including five starts. He threw for more than 1,000 yards with nine touchdowns.

WHAT THEY SAID

“Rex has been through hell and back. To see him celebrating that touchdown with his teammates, it meant so much to us because we know the process it took to get to that moment. What we think is most admirable about Rex is his perseverance. I think that cancer at a young age like that, and 100 hours of chemotherapy, changes your perspective on a lot of things. You don’t really harbor the negative. You don’t be bitter. You just look forward to what’s next.” – Monica Culpepper

2020 Rare Disease Champion Team: Learn more about Syracuse punter Nolan Cooney using his experience as a rare cancer survivor to inspire hope


Nolan Cooney

University: Syracuse University

Vitals: 6-3, 202 pounds, senior, punter

Quick Hits: Nolan had a rare cancer scare in high school that gave him a different perspective on patience and made waiting four years to become the No. 1 punter for the Orange no problem. The four-time ACC Honor Roll and six-time Syracuse Athletic Director’s Honor Roll selection flourished during his year in the spotlight. A former Vice President for the Syracuse Chapter of Uplifting Athletes and the 2019 recipient of the team’s Jim DaRin Courage Award as a testicular cancer survivor, Nolan earned third-team All ACC honors and was an honorable mention All-American selection from Pro Football Focus. The former walk-on set a single-season program record averaging 44.8 yards per punt in 2020. He led the nation in punt attempts (74) with 24 downed inside the opposing 20-yard line, 25 traveling at least 50 yards and only three finding the end zone for a touchback. Nolan also was the kickoff specialist and, for the third consecutive season, was the kick holder. In addition to his on-field accomplishments, Nolan won the ACC’s Brian Piccolo Award, given annually to the most courageous player in the league.

INSIDE THE RARE JOURNEY

Elite athletes have this unique drive and mentality that no matter what the challenge in front of them might be, defeat is not an option. When Syracuse punter and NFL prospect Nolan Cooney was diagnosed with a rare form of testicular cancer that spread to his lungs as a junior in high school, in his mind this was just another challenge ripe to be defeated.

The road to a clean cancer scan was never going to be easy, and the 30 chemotherapy treatments Nolan endured over nine weeks took a toll on his body and challenged him mentally. Being a three-sport athlete was a part of his DNA. Sitting around and watching sports instead of playing, battling the side effects of chemo treatments and facing an uncertain future gave Nolan a perspective that helped shape who he is today.

Nolan returned to play basketball later in the season of his junior year in high school after he recovered. And on many fronts, the challenge of his diagnosis and his positive mental attitude allowed him to resume a normal life.

Deep down, though, Nolan knew this experience had changed him. While he was receiving his treatments he received a call from former champion cyclist and testicular cancer survivor Lance Armstrong. He also received a visit from Joe Andruzzi, a former New England Patriot and Super Bowl winning offensive lineman and cancer survivor. Andruzzi provides support to families affected by the disease in the New England area. 

Nolan remembers the impact those moments had on him during those dog days of treatment. And he knew part of his responsibility as a survivor was to pay it forward.

When Nolan arrived at Syracuse as a walk-on, he volunteered to serve in a leadership role for the Syracuse Chapter of Uplifting Athletes. It was an opportunity for him to give back and inspire others in the Rare Disease Community. He served in that role for three years.

More reserved and quiet than most in a college football locker room, Nolan stepped out in 2020 and became a stronger voice and advocate for the rare disease cause. Nolan has been more open with his story about his battle with testicular cancer and uses a podcast he hosts on positive mindset, health and nutrition as a platform to bring additional attention to the cause.

His stellar senior season in 2020, where he averaged a program record 44.8 yards per punt, has made Nolan a bona-fide NFL prospect. He will take his shot in 2021 and plans to use his platform in the run-up to the NFL Draft to continue his mission of raising awareness for the Rare Disease Community.

WHAT THEY SAID

“Through Uplifting Athletes, I found a connection to the rare disease cause with my own life, as I am a testicular cancer survivor. Using sports, specifically college football, to raise awareness also affords me the opportunity to use my platform to share my story and the importance athletics plays in it.” – Nolan Cooney

Meet the five inspiring leaders on the 2020 Uplifting Athletes Rare Disease Champion Team


Uplifting Athletes is pleased to announce the 2020 Rare Disease Champion Team.

For more than a dozen years, Uplifting Athletes has celebrated leaders in college football that have made a positive and lasting impact on the Rare Disease Community through its Rare Disease Champion initiative.

The five members of the 2020 Uplifting Athletes Rare Disease Champion team are Syracuse punter Nolan Cooney, Syracuse quarterback Rex Culpepper, Stanford head coach David Shaw, Austin Peay defensive lineman Josephus Smith and Northwestern defensive lineman Joe Spivak. 

Uplifting Athletes couldn’t be more proud to share these inspiring rare disease stories.

“We have been moved by the way each member of the 2020 Rare Disease Champion Team has used their platform to inspire, serve and support the Rare Disease Community,” Uplifting Athletes Executive Director Rob Long said. “Our tradition of honoring the team at in-person events is not plausible during these times, but we feel it is our duty and honor to recognize, celebrate and share their inspiring accomplishments and stories.”

Each member of the 2020 Rare Disease Champion Team will be honored and celebrated during the first two weeks of Rare Disease Awareness Month in February 2021.

The Rare Disease Champion Team is an Uplifting Athletes awareness initiative that is part of the National College Football Awards Association (NCFAA). Nominees for the award were solicited from any NCAA FBS, FCS, Division II or Division III institution or college football program nationwide.

Kent State wide receiver Antwan Dixon, Davidson linebacker George Hatalowich, Syracuse offensive lineman Sam Heckel, Penn student assistant Anthony Lotti and Kentucky linebacker Josh Paschal comprised the 2019 Rare Disease Champion Team.

Past Rare Disease Champion winners consist of seven FBS players including USC long snapper Jake Olson (2016), UCF linebacker Shaquem Griffin (2018) and Auburn wide receiver Sammie Coates (2015), one FCS player, a Division III quarterback, two FBS assistant coach and an administrator from AFCA. 

The Uplifting Athletes Rare Disease Champion Team is a member of the National College Football Awards Association. The NCFAA encompasses the most prestigious awards in college football. Founded in 1997, the NCFAA and its 25 awards now boast over 800 recipients, dating to 1935.

Chapter Update: Florida State pulls off big-time upset and three other chapter schools pick up Week 6 wins


For the first time in more than a half century an unranked Florida State team beat a top-five ranked team in Doak Campbell Stadium with a narrow victory over North Carolina. The last time it happened was October 16, 1965 when the Seminoles recorded a 10-3 win over No. 5 Georgia.

The upset provided Mike Norvell his first ACC victory as the Florida State head coach. The Seminoles’ last victory over a top-five team came in 2014 when they edged Notre Dame.

Quarterback Jordan Travis completed only eight passes, but finished with 191 yards through the air to average nearly 24 yard per completion. He also rushed 16 times for 107 yards and a pair of touchdowns. Florida State also blocked a pair of punts in the first quarter and now leads the nation in blocked kicks with five.

Florida State Chapter President, linebacker DeCalon Brooks, scooped up a blocked punt on the first drive of the game and returned it 18 yards to set up FSU’s first touchdown. Fellow FSU Chapter Leader, wide receiver Keyshawn Helton, had two catches for 43 yards.

Clemson: The Tigers scored a school record 52 points in the first half to extend its road winning streak to 14 games with a victory over fellow Uplifting Athletes Chapter Georgia Tech. The previous mark for points in a half was 49 against Wake Forest in 1981. Clemson quarterback Trevor Lawrence became only the second quarterback in school history to throw for 400 yards and five touchdowns in a road game. Lawrence joins Tajh Boyd, who did it twice – once in 2012 and another time in 2013. Clemson Chapter President, punter Will Spiers, averaged 50.7 yards on three punts. The senior also made a late cameo appearance at quarterback for the Tigers, completing 2 of 3 passes for 13 yards.

Notre Dame: Sophomore running back Kyren Williams posted his third consecutive 100-yard game to help the No. 4 ranked Fighting Irish edge Louisville to remain unbeaten. Williams finished with 127 yards on 25 carries. Louisville came into this contest averaging nearly 425 yards a game offensively, but an Irish defense that surrendered fewer than 12 points a game on average held the Cardinals to a season-low 219 yards and seven points. Notre Dame Chapter President, linebacker Drew White, finished with three tackles including a tackle for a loss.

NC State: The Wolfpack trailed by six at halftime, but used a strong defensive effort in the second half to roll past Duke at home. NC State outscored the Blue Devils 17-0 in the second half. Redshirt sophomore linebacker Payton Wilson had a pair of interceptions to become the first Wolfpack linebacker with a pair of interceptions in the same contest since Jerod Fernanez picked off No. 1 ranked Florida State twice in the 2014 matchup. Wilson also finished with a team-high 19 tackles in the victory over Duke, the most tackles for a Pack player since Earl Wolff had 19 vs. Clemson in 2012.

Syracuse: Back-up quarterback Rex Culpepper, playing in place of injured starter Tommy DeVito, threw three touchdown passes and running back Sean Tucker notched his second 100-yard game of the season in a home loss to Liberty. Former Syracuse Chapter Leader, punter Nolan Cooney, averaged 46.5 yards per punt and he dropped all six of his punts inside the 20-yard line.

Joshua Eargle, the 2019 Uplifting Athletes Rare Disease Champion, stood in for Kansas’ Les Miles Saturday at West Virginia as the Jayhawks acting head coach. Miles was unable to make the trip to Morgantown after testing positive for COVID-19. Eargle won the award for his inspiring efforts to advance support and awareness for his daughter’s battle with an ultra rare disease.
Each week during the college football season we will feature a player who is an officer for an Uplifting Athletes Chapter. This week we feature Western Michigan linebacker and Chapter President Zaire Barnes.

Meet Uplifting Athletes 2019 Rare Disease Champion Team member Antwan Dixon from Kent State University


Starting this season, the focus of the Rare Disease Champion Award shifted to a team concept in order to provide a platform to recognize all the qualified leaders that have made a significant and lasting impact on the Rare Disease Community. The Rare Disease Champion Team ensures all the inspiring rare disease stories of qualified leaders in college football are shared and celebrated. Uplifting Athletes will honor the 2019 Rare Disease Champion Team at the Maxwell Football Club Awards Gala in Atlantic City and at the Uplifting Athletes Young Investigator Draft in Philadelphia March 6 and 7, respectively.

Antwan Dixon

University: Kent State University

Vitals: 5-8, 180-pound, redshirt junior, wide receiver

Quick Hits: The native of Florida was diagnosed with the rare blood disorder aplastic anemia in high school, but continued to play football until 2016 when his rare diagnosis took a turn for the worse. He was forced to leave school, received a life-saving bone marrow transplant from his father and spent nearly 36 months away from the game before he was cleared to return in 2018. Antwan has appeared in every game the last two seasons for Kent State and was inspired to use his voice and platform to help others.  So, he took a leadership role and started the Kent State Chapter of Uplifting Athletes. During his comeback season in 2018, Antwan was recognized as a Mayo Clinic Comeback Player of the Year and the Columbus Touchdown Club Male Athlete of the Year.

INSIDE THE STORY

Antwan is adamant about how his battles with the rare blood disorder, aplastic anemia, turned his life upside down.

He was diagnosed with the rare disease in high school, but it wasn’t until after his freshman year in college that his health took a serious downward spiral and became critical and life threatening.

Antwan loved playing football and was motivated to be the very best at his craft. He remained a very committed and focused athlete who has NFL dreams and aspirations.

During his 30 months away from Kent State, while battling for his life, Antwan realized he was lost in his day-to-day world and blinded by his ambitions around football.   This is when he discovered a whole other person he had no idea existed.

His relationship with his father was always solid. And it became an even stronger bond when his father donated his bone marrow for the life-saving transplant Antwan needed. But during his lowest points physically, he discovered a new-found bond with his mom and brother that would never have developed had he not taken a sudden and drastic turn for the worse.

“Getting sick was such a blessing for me. I saw life from a different standpoint. I’ve made so many life memories since I got sick,” Antwan said. “I built a better relationship with my little brother. We were always good, but we were not tight until I got sick. He saw life differently … I saw life from a different standpoint. Same with my Mom. I was always tight with my Dad, but my Mom was a rock for me. Now we are super tight, too. Out of all the struggles I went through came a new life.”

And a new perspective for Antwan. During his two years away from Kent State and playing football, getting healthy and back on the field was a very powerful motivator. It was the fuel that drove him. At the same time, though, Antwan also discovered being a football player had consumed his identity.

He still has the dream to play in the NFL and is driven to take his very best shot. But that’s just one facet of Antwan the person.

Inspired by his high school guidance counselor, Antwan wants to mentor kids in the future. He enjoys serving and helping others by giving back. Not only is he involved with Uplifting Athletes, but he also visits an elementary school in town to spend time with the kids to serve as an example and mentor. He volunteers with Habitat For Humanity and tries to take advantage of every community service opportunity presented to the football team.

“Football is not my Plan A. I’ve always had a dream of playing in the NFL. I’m not giving up that dream. But there are a lot of things I want to do to help people in this world,” Antwan said. “I’m coming back to school to get my masters degree in counseling. I want to help other people. That motivates me. Whether its kids, people with blood disorders or cancer … whatever. I want to help people who are struggling.”

THE RARE JOURNEY

In 2013, after his sophomore year of high school, Antwan knew something wasn’t right. He struggled physically during track season and his originally diagnosed sinus infection was not going away.

Further tests revealed the three-sport athlete who was a star on the football field had aplastic anemia – a rare autoimmune disease in which the body fails to produce blood cells in sufficient numbers. Blood cells are produced in the bone marrow by stem cells that reside there. Aplastic anaemia causes a deficiency of all blood cell types: red blood cells, white blood cells, and platelets.

His initial treatment protocol was working and despite missing his junior season of football, he returned to play basketball and run track. And Antwan played all three sports his senior year.

He received a scholarship offer to Kent State University and, once he arrived on campus in Ohio, was an impact player right away as a true freshman.

Following his first collegiate season in 2015, Antwan had a big-time setback and fell very ill again so he left Ohio and returned home to Florida. His doctors put him on the same treatment protocol that was successful the first time. Only this time it didn’t work.

Antwan needed a life-saving bone marrow transplant to survive. He lost nearly 50 pounds, spent almost all of 2017 in and out of hospitals before his father, Anthony, was matched and Antwan received his transplant.

After nearly 30 months away from Kent State, Antwan returned to school, but the scholarship offer that his head coach guaranteed would be waiting for him was off the table. The university had made a change and when Antwan returned to Ohio in early 2018, the entire coaching staff was new.

He would be given an opportunity to prove himself, but there were no guarantees of a scholarship. That’s all Antwan needed to hear. After being cleared by four doctors to make a return to the field, Antwan not only earned his scholarship back, he became a starting wide receiver right away.

In his first game back after missing the entire 2016 and 2017 seasons, Antwan caught a touchdown pass for the Golden Flashes. And he has played in every single game since and played a major role in Kent State winning its first bowl game in school history to close out a memorable 2019 season.

Right now Antwan is healthy and strong. But he knows his battle with aplastic anemia is not a done deal. The rare disease could return at any time.

WHAT THEY SAID“Being a survivor means beating the odds. There’s not a big chunk of people that survive this blood disorder. There’s not a lot of people who make it out of my hometown. Just to be able to survive the odds and be different. That’s what being a survivor means to me. My mom put a Superman “S” in front of it because she says I’m her Superhero. Being a survivor has a very special meaning to me for sure.” – Antwan Dixon

Meet Uplifting Athletes 2019 Rare Disease Champion Team member Sam Heckel from Syracuse University


Starting this season, the focus of the Rare Disease Champion Award shifted to a team concept in order to provide a platform to recognize all the qualified leaders that have made a significant and lasting impact on the Rare Disease Community. The Rare Disease Champion Team ensures all the inspiring rare disease stories of qualified leaders in college football are shared and celebrated. Uplifting Athletes will honor the 2019 Rare Disease Champion Team at the Maxwell Football Club Awards Gala in Atlantic City and at the Uplifting Athletes Young Investigator Draft in Philadelphia March 6 and 7, respectively.

Sam Heckel

University: Syracuse University

Vitals: 6-4, 280-pound, redshirt junior, offensive line

Quick Hits: A native of Wisconsin, Sam lives with congenital thrombotic thrombocytopenic purpura (TTP), a rare blood disorder that does not allow for the production of the ADAMTS13 enzyme, which breaks down large proteins. In order to help his body manage this rare disease, he must undergo 14-20 hours of plasmatherapy every two weeks, including during the football season. When he arrived on campus, Sam learned about the strong tradition of leadership within the Syracuse Chapter of Uplifting Athletes and, being a rare disease patient himself, the cause had purpose and special meaning to him. He attended the Leadership Development Conference in 2018 and 2019 and has been the Syracuse Chapter President the past two years. A full-time starter in 2017 on the Orange offensive line, Sam rotated as the sixth man in 2018 and played in every game. This season he earned the job as the starting center before injuries forced him to the sideline early in the year.

INSIDE THE STORY

From the time he nearly died while in elementary school because doctors struggled to diagnose his rare disease, Sam has faced long odds as an athlete.

His TPP diagnosis would require monthly treatments for the rest of his life.  At one point he wasn’t sure doctors would even allow him to play contact sports and Sam was always balancing his medical condition with being an elite athlete.

His dream to be a Division 1 college football player drove Sam on the field, in the classroom and at the hospital. With the help of a strong support team, led by his family, a scholarship to Syracuse allowed him to realize his dream.

The demands of being a student-athlete kept Sam inside that bubble of structure and routines he already was familiar with. Practices, workouts, meetings, classes and studying – the routine of it all was very comfortable to Sam.

“It’s almost a miracle that I got to be a college football player and am living my dream,” Sam said. “All throughout my life I’ve had to rely on other people … my parents, doctors, trainers. Whenever I wanted to do something, I had to rely on other people so much.”

It took a strong and dedicated support team around Sam just to make it to Syracuse, and once that circle of trust expanded in college, it was easy for him to find success.

He was a starter sooner than later for the Orange along the offensive line. Sam filled in at a couple spots up front in 2018 and became an experienced veteran. Coming out of camp prior to the 2019 season he was named the starting center. Once again Sam overcame the odds and was poised to take that next step as a football player.

In the first game of the season, Sam suffered his third concussion in 13 months. And the odds were simply too stacked against him with three head injuries in such a short period of time.

He worked through the recovery protocol as instructed, continued to stay involved with the team and held out hope of once again stepping on the field inside the dome at Syracuse to play the game he dearly loves.

The biggest challenge in his life, overcoming his rare blood disorder to play football, didn’t keep him off the field. Three concussions did, though.

Sam was medically disqualified from ever playing football again following the 2019 season. It was a sudden end he admits, but also said it took him about a minute to accept the diagnosis.

“Being a collegiate athlete, everyone knows it’s going to come to an end. I just didn’t know it was last season. The suddenness of it, that was the harder part for me,” Sam said. “It was a difficult transition for sure, having that taken away from you. I wasn’t used to being a non-athlete.”

Sam is still adjusting to life as a student instead of a student-athlete. He plans to remain involved with the team, helping out the younger players and doing what he can to make a positive contribution to the football team. It’s what he worked so hard to do on the field. Now he’s re-directing that same passion and energy in another direction.

Despite being medically disqualified, Sam will remain on scholarship at Syracuse. He will receive his undergraduate degree in the spring, stay involved with the team in 2020 and begin work on his Master’s degree.

“I still feel like I’m still trying to grasp who I am outside of being a football player,” Sam said. “I’m figuring out it’s all about re-directing your energy as a person. Now I can re-direct my energy in different directions. I have time, and I get to choose a little more what I had to put my energy toward.

“I’m more independent and rely on myself more, and I’m enjoying it. Football and Syracuse gave me everything I ever needed and wanted. I’m so grateful for that. That’s why I feel I have to stay involved and give back.”

THE RARE JOURNEY

Sam was born with thrombotic thrombocytopenic purpura (TTP), a rare blood disorder that does not allow for the production of the ADAMTS13 enzyme, which breaks down large proteins.

Early in his life, obtaining an accurate diagnosis was difficult and once doctors were able to pinpoint his rare disease, coming up with a functional treatment protocol proved tricky as well.

For most of his life, Sam received 14-20 hours of plasmatherapy every three weeks. It was a day-long process that also came with a couple days of recovery to feel normal. Despite nearly dying when he was in elementary school, Sam’s treatment allows him to live a normal life.

He was a star offensive lineman during his high school days at Waukesha West in Wisconsin and that landed him a scholarship offer from Syracuse.

Playing major college football was always the pie-in-the-sky dream for Sam and getting recruited to upstate New York allowed him to fulfill that life-long goal.

As a kid growing up, despite his rare blood disorder, Sam wanted to be on a level playing field with his peers. He didn’t want to be known as the football player who also had a rare disease. So he was extremely hesitant about sharing his journey.

That changed when he arrived at Syracuse.

Once on campus, Sam learned about the strong tradition of leadership within the Syracuse Chapter of Uplifting Athletes and, being a rare disease patient himself, the cause had purpose and special meaning to him.

Still reluctant to talk about his rare diagnosis because he preferred to let his play on the field speak for itself, Sam soon discovered he had a story to share that needed to be shared. Inspired by his work as a leader of the Syracuse Chapter, Sam learned his voice is strong and his platform as a college football athlete is significant.

WHAT THEY SAID

“I feel like with the position I was in with Uplifting Athletes, I realized there are some kids out there right now that are in the same shoes I was in growing up. And if what I went through can help them … give them some hope in any way and let them know they can still have hope no matter what they are going through, they need to know that. You can’t let a health issue determine what you are going to do with the rest of your life. I know the Rare Disease Community doesn’t have a lot of athletes out there, and I’m one of them. So I had to do what I could to help.” – Sam Heckel

Meet Uplifting Athletes 2019 Rare Disease Champion Team member Josh Paschal from University of Kentucky


Starting this season, the focus of the Rare Disease Champion Award shifted to a team concept in order to provide a platform to recognize all the qualified leaders that have made a significant and lasting impact on the Rare Disease Community. The Rare Disease Champion Team ensures all the inspiring rare disease stories of qualified leaders in college football are shared and celebrated. Uplifting Athletes will honor the 2019 Rare Disease Champion Team at the Maxwell Football Club Awards Gala in Atlantic City and at the Uplifting Athletes Young Investigator Draft in Philadelphia March 6 and 7, respectively.

Josh Paschal

University: University of Kentucky

Vitals: 6-3, 285-pound, redshirt junior, defensive end

Quick Hits: Diagnosed with a rare malignant melanoma on the bottom of his right foot in July of 2018, the Wildcats’ defensive standout faced a new battle. Josh endured four surgeries and a year-long treatment protocol of monthly immunotherapy treatments. He missed most of the 2018 season, but he found the strength to return for the final three games. The guy teammates call the “heartbeat of the team” and who was elected team captain by his peers completed his treatments in August of 2019 and was a full-time starter last season.

INSIDE THE STORY

Before he knew anything about what was going on in his foot, before he learned of his diagnosis with a rare malignant melanoma, the University of Kentucky defensive standout was already exploring a new part of his life.

Josh was becoming fully in touch with his spiritual side absent of a life crisis. He found strength and purpose in being a believer.

Shortly before finding out the nagging stinging he noticed in his foot was a serious problem, Josh made a commitment to turn his life over to Christ.

Now on the other side of his diagnosis, back to playing the game he loves for the Kentucky Wildcats and chasing his NFL dream, Josh knows the timing of his faith commitment was no coincidence.

“It was only a couple months before my diagnosis that I made the decision to turn my life over to Christ,” Josh said. “I just remember hearing a testimony about how the hardest thing we can do as believers is giving up ourselves wholly to Christ. After that was the first time I put my full trust in him.

“Then I was told I had cancer. I believed I would get through it, though. I knew it was something that to give me an opportunity to share his Kingdom.”

Josh credits his faith with giving him the strength to keep everything that was going on with his diagnosis in perspective. He battled through several surgeries and setbacks trusting the plan was not his own, but rather God’s plan for him.

And it changed him on several fronts. He became keenly aware of how much emphasis he was putting on being a football player. His perspective on the game and how he saw life altered.

Fortunately when he returned to the field, he was the same player as before his diagnosis. He just saw and approached almost everything he did with a slightly different lens.

“Before all this, I wasn’t the type of guy to share much. Once I had football taken away from me, my love for the game changed. I almost had it taken away from me, and that’s something I never experienced,” Josh said. “When it came back it was the same in many ways, but also very different. I appreciate getting up early to work out, doing extra drills and sprints. I look at film and realize how far I’ve come along on the journey. We look at big picture a lot as players, but I now enjoy the journey of each day.”

THE RARE JOURNEY

Late in 2017 and into the early part of 2018, Josh noticed a small spot on the bottom of his foot. He told the University of Kentucky trainers about it and they told Josh they would keep an eye on it over the next couple of months.

The pain wasn’t obvious. Occasionally, when he would run and hit the right spot with his foot, he would notice a little sting. In the life of an elite football athlete, a small spot on the bottom of your foot is not real cause for concern.

During the summer of 2018 – prior to Josh’s redshirt sophomore season – he was sent to see a podiatrist about the spot on his foot that wasn’t going away. The podiatrist sent him to a dermatologist who removed the spot surgically and told Josh he would have it tested.

The only thought going through Josh’s mind at the time was how fast can he get out of the walking boot he was in and to return to summer workouts full-time.

When he returned to see the dermatologist for his follow-up and hopefully to remove the walking boot, the news was not good.

He was diagnosed with a malignant melanoma in his foot and it was deep enough that the doctors were concerned about it traveling to other parts of his body.

“When I first found out I was shocked,” Josh said. “I was all excited for the follow-up appointment to get out of my walking boot and go back to work.”

Football was immediately put on hold that August day. He quickly met his oncologist and started monthly immunotherapy treatments that would take a full year to complete.

And he had follow-up surgeries in order to make sure the melanoma had not spread. Josh had procedures on his groin, shin and another one on his foot to be safe.

“The most consistent thought (in my head) I had was not to trust my plan and trust God’s plan,” Josh said. My family, parents, sister and brother, they all rallied around me and kept me strong. What went through my head the most was not to be so worried about my plan but to follow God’s plan.”

As a testament to his determination, Josh made a comeback before the end of the 2018 season – only three months after his diagnosis. He played in Kentucky’s final three games and was named Southeastern Conference (SEC) Co-Defensive Player of the Week following the game against Middle Tennessee.

He continued his monthly treatments throughout the offseason and just prior to the 2019 season he completed his treatment protocol.

Josh started 13 games for the Wildcats this past season, notching 34 tackles, 9.5 tackles for a loss, 8.5 sacks, 3 pass break-ups and forced four fumbles.

“Coming back (in 2019) and going through the season, I noticed there was a time before this where I would say I was grateful for everything. But now I know what that really means,” Josh said. “I was so humbled by the small things. I believe going through this is a big part of my journey. It’s helping me connect with other people I never would have talked to. I get to speak at different events and share my testimony. We are here to serve others and I believe that’s what I’m doing when I step on the field.”

WHAT THEY SAID

“When you go through something like that, there are a lot of thoughts racing through your head. You don’t think about who is going to be there for you. But you learn all those thoughts in your head and who’s going to be there for you go hand in hand. It surprised me, but at the same time it didn’t. Because when I look back at it, I see a lot of family. I never felt alone.” – Josh Paschal