The Rare Disease Champion Team

Diagnosed with a rare malignant melanoma on the bottom of his right foot in July of 2018, Josh, the Wildcats’ defensive standout, faced a year-long battle.

Josh endured three surgeries and a year-long treatment protocol of monthly immunotherapy treatments and missed most of the 2018 season, but he found the strength to return for the final three games in 2018.

Josh, the guy teammates call the “heartbeat of the team” completed his treatments in August of 2019 and is a full-time starter this season.  Elected the team captain by his peers, Josh is back to making impact plays for Kentucky. 

After his final treatment in August, Josh didn’t allow any video cameras and chose not to ring the bell - a tradition for patients after their final treatment.  His reason for trying to stay out of the spotlight at that moment?  “I see other people in the waiting room who are much worse than me,” he said. “And I don’t want to make them feel bad.”

Anthony made the selfless decision to sign up to donate his bone marrow through Penn’s “Be The Match” program. While studying for finals in April of 2019, he found out he was a match with a leukemia patient and he arranged to donate his bone marrow over the summer during a break from football.

As Anthony prepared for his bone marrow transplant, he was also recovering from a severe shoulder injury. His plan was to return to the field, but the injury was too severe and resulted in nerve damage that ended his football playing career.

He’s still part of the Quakers team, serving as a student assistant coach and sending in defensive signals.

Inspired by a high school friend and teammate who was impacted by rare diseases, George, a Wildcats’ linebacker was motivated to help the Rare Disease Community through the Davidson Wildcats football program.  George’s passion and commitment to the cause led him to start an Uplifting Athletes Chapter at Davidson College as a junior in 2018.

George worked tirelessly to get the chapter started and to engage his teammates to support the cause.  Under his leadership, the Davidson Chapter held Lift For Life events, participated in Touchdown Pledge Drive in 2018 and 2019, and hosted the first Uplifting Experience at Davidson.

George’s efforts, along with his team, led to the fourth highest fundraising total for a new chapter in Uplifting Athletes history and provided immeasurable inspiration for the Rare Disease Community.

In addition to being the co-founder, George currently serves as the Chapter President and attended the Uplifting Athletes Leadership Development Conference in 2018 and 2019.

Earlier this year, George, who has played in 40 games for Davidson at linebacker, was one of 22 players chosen for the AFCA Good Works Team.  Established in 1991, the AFCA Good Works Team recognizes a select group of college football players who have made a commitment to serving and enriching the lives of others.

Antwan was diagnosed with the rare blood disorder aplastic anemia in high school. He continued to play football until 2016 when his rare disease diagnosis took a turn for the worse. Forced to leave Kent State University, Antwan was in-and-out of the hospital, went without solid food for two months and dropped to only 125 pounds. He received a life-saving bone marrow transplant from his father in 2017 and started on the road to recovery.

Antwan returned to school in early 2018 and, prior to the start of the season, was cleared by four doctors to start playing football again after nearly 36 months away from the game. He appeared in every game his final two seasons at Kent State and caught a touchdown pass his first game back.

The native of Florida started the Kent State Chapter of Uplifting Athletes and oversaw the Golden Flashes inaugural Lift For Life event as the Chapter President. Antwan was the Mayo Clinic 2018 Comeback Player of the Year.

Sam lived out his dream of playing big-time college football as an offensive lineman for three seasons after nearly dying from complications related to his rare diagnosis. The native of Wisconsin lives with congenital thrombotic thrombocytopenic purpura (TPP), 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, he must undergo 14-20 hours of plasma therapy every three weeks, including during football season. When Sam first joined the team at Syracuse University, he learned about the strong tradition of leadership within the Syracuse Chapter of Uplifting Athletes. Being a rare disease patient himself, the cause had purpose and special meaning to him.

Reluctant to talk about his rare diagnosis because he wanted his performance to speak for itself, Sam learned his voice is strong and his platform is big. He spent two years as the Syracuse Chapter President, giving back to the Rare Disease Community he is a part of.

The night before Ryan and the rest of the 2017 Stanford Cardinal team was due to fly out to play in the Alamo Bowl, Ryan was packing at his home in Fresno, Calif. when he received a phone call from Stanford Hospital. A pathology report had come back about a lump under the linebacker’s armpit and a biopsy revealed he had tested positive for a rare form of Non-Hodgkins lymphoma called “ALK-positive.”

Scared and uncertain about his future, Ryan stayed home and sought an immediate diagnosis for what turned out to be a treatable form of lymphoma. Ryan underwent six rounds of chemotherapy, lost his hair and considerable weight off his 6-1, 230-pound frame. Ryan was unsure about his football future and missed spring practice and two quarters of school. He never complained.

Ryan was cleared to participate in fall camp in the summer of 2018 and didn’t miss a beat. He played in all 13 games on special teams that season and in 2019 went on to make his first collegiate start against Colorado. Ryan's determination to return to his team and to stay active by attending classes was inspirational for others. 

Nick was a two-time captain and finished his University of Illinois career with 36 consecutive starts, playing nearly every snap on the offensive line over his final two seasons.

His family has a strong connection to the Rare Disease Community through his brother who was diagnosed with a rare disease. 

Off the field during his Illinois career, Nick served as Illinois’ Uplifting Athletes Chapter President for two years, raising more than $88,000 to support the Rare Disease Community through the team’s annual Lift for Life event. He has been a candidate for many community services awards, including 2018 Uplifting Athletes Rare Disease Champion Award (Finalist), 2018 Jason Witten Collegiate Man of the Year (semifinalist), 2018 Campbell Trophy (semifinalist) and 2018 Senior CLASS Award candidate.

Nick was taken by the Kansas City Chiefs in the seventh round (216th overall) of the 2019 NFL Draft and won a Super Bowl with the Chiefs as a rookie.

Sam lived out his dream of playing big-time college football as an offensive lineman for three seasons after nearly dying from complications related to his rare diagnosis. The native of Wisconsin lives with congenital thrombotic thrombocytopenic purpura (TPP), 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, he must undergo 14-20 hours of plasma therapy every three weeks, including during football season. When Sam first joined the team at Syracuse University, he learned about the strong tradition of leadership within the Syracuse Chapter of Uplifting Athletes. Being a rare disease patient himself, the cause had purpose and special meaning to him.

Reluctant to talk about his rare diagnosis because he wanted his performance to speak for itself, Sam learned his voice is strong and his platform is big. He spent two years as the Syracuse Chapter President, giving back to the Rare Disease Community he is a part of.

Antwan was diagnosed with the rare blood disorder aplastic anemia in high school. He continued to play football until 2016 when his rare disease diagnosis took a turn for the worse. Forced to leave Kent State University, Antwan was in-and-out of the hospital, went without solid food for two months and dropped to only 125 pounds. He received a life-saving bone marrow transplant from his father in 2017 and started on the road to recovery.

Antwan returned to school in early 2018 and, prior to the start of the season, was cleared by four doctors to start playing football again after nearly 36 months away from the game. He appeared in every game his final two seasons at Kent State and caught a touchdown pass his first game back.

The native of Florida started the Kent State Chapter of Uplifting Athletes and oversaw the Golden Flashes inaugural Lift For Life event as the Chapter President. Antwan was the Mayo Clinic 2018 Comeback Player of the Year.

The former Austin Peay State University Offensive Coordinator and current University of Kansas Assistant Coach has a daughter, Landrey, who is the first known person in the United States to be diagnosed with a rare mutation of the CSNK2B gene.

Landrey battles myoclonic epilepsy, intellectual disability, a congenital heart defect, and immunodeficiency. She spent the first 73 days of her life critically ill on life support, enduring major open heart surgery and surviving four codes. Until the age of four, Landrey was critically or acutely ill 40 percent of her life. She’s battled through 15 hospitalizations and there is no cure for this condition.

Coach Eargle is tenacious, unfortunately, mostly due to the battle he endures. Eargle’s strength and unrelenting fight is a calming presence to his daughter, and his calm under extreme pressure allows their family to have a laser focus on their mission rooted in inspiring others through faith, hope and joy.

Shaquem was born with the rare disorder amniotic band syndrome of his left hand. He endured the pain for four years before his hand was surgically removed in 1999. Shaquem was told “you can’t” most of his life, but he loved the game of football and his passion to play was stronger than his absence of a left hand. His identical twin brother, Shaquill, and he chose to play college football at UCF because the school was committed to giving both Griffins the opportunity to play. 

It took Shaquem longer to become an impact player at UCF because of a position switch from safety to linebacker, but once he found the field, his impact was almost immediate. In his first year as a starter he won the American Athletic Conference (AAC) Defensive Player of the Year award. The combination of speed, power and athleticism completely overshadowed the challenges he faced.

Shaquem was drafted in the fifth round of the 2018 NFL Draft (141st overall) by the Seattle Seahawks and joined Shaquill in the same NFL city - Shaquill was drafted in the third round by the Seahawks in 2017.

A young and talented running back in his second year at Louisiana Tech, Jaqwis was ready to take the next step in his college football career and become an impact player for the Bulldogs . In early October of 2016, Jaqwis was handed a challenge he never saw coming. He was diagnosed with a rare form of Stage 3 Hodgkin’s lymphoma.

His football career was put on hold while he underwent four months of intense chemotherapy. In February of 2017 he received the good news the treatments had worked and he was cancer free. He followed up with a couple more radiation treatments to make sure all the cancerous cells were gone before getting cleared to begin training for the upcoming season.

In the 2017 opener versus Northwestern State, the redshirt sophomore was able to finish what he started a year earlier by forcing his way into the end zone at the end of the third quarter for a four-yard rushing touchdown to give LA Tech a 31-24 lead over the Demons. It was the first touchdown of his college career.

Before Zach walked on at Syracuse University after a year of junior college football, his passion for the Rare Disease Community already existed. 

Zach had a childhood friend, Blake Donegan, who he fell out of touch with for quite a while.  When Zach saw his friend again in high school he was in a wheelchair, diagnosed with the rare disease Niemann-Pick disease, Type C, a lipid storage affliction that can lead to respiratory failure and liver damage and has no known cure. Blake deals with seizures on a regular basis and struggles to speak, eat or stand on his own. But he’s a fighter with an infectious never-give-up attitude that served as a great inspiration for Zach.

Zach eventually earned a scholarship at Syracuse and became a reliable No. 2 QB, throwing for more than 2,000 yards in his career. Inspired by Blake to make a difference, Zach served as President of the Syracuse Chapter of Uplifting Athletes for two years. Zach still owns the Syracuse record for most touchdown responsibility in a game with seven (five passing, two rushing) in a win over Pittsburgh. He broke Jim Brown’s record of six.

Casey was a standout quarterback as a freshman in high school before being diagnosed with the rare disease osteosarcoma. Athletics were a big part of his life up to that point - Casey also played ice hockey, lacrosse, ran track and took up golf for which he was named all conference his senior year. 

When you spend 165 nights in the hospital over the course of 17 months you learn something about yourself. It appeared his football playing days, the sport he loved the most, were over.  All those nights in the hospital gave Casey time to think and he came up with a plan to become a holder. 

Casey, who is a four-time rare cancer survivor, was a holder for his high school team his final two years and walked on the University of Minnesota with the intention of playing for the Golden Gophers. On October 19, 2019 the redshirt sophomore earned his first official snap as a member of the Minnesota football team when he held for the extra point at home against Rutgers.

James knew his star was on the rise after the University of Pittsburgh running back earned ACC Player of the Year honors in 2014, rushing for nearly 1,800 yards and 26 touchdowns that year. Then came 2015 - a year that changed Conner as a person. First, he suffered a serious knee injury in the first half of the season opener and, less than three months later, was diagnosed with Hodgkins’ lymphoma.

Very few can understand the long odds, work ethic and grind it took for James to return to the field for Panthers in 2016 to rush for more than 1,000 yards as a team captain. Yet through it all, James never stopped thinking of others or looking for ways to help and inspire others. The fabric of James the person was on display for all to see. His knee injury started James down a path that would create a whole new prism of life that was unexpected. 

James won the Disney Spirit Award following the 2016 season and after declaring early for the NFL, the native of Erie was drafted in the third round of the 2017 NFL Draft by his hometown team - the Pittsburgh Steelers.

Mitchell had positioned himself to become a big-time contributor for the Iowa State defense following his redshirt sophomore year in 2014. He had two years of starting at defensive end and also played some snaps inside along the line. He was versatile, experienced and had two years of eligibility remaining.

During the offseason, swelling in his neck escalated into what Mitchell described as a feeling of being choked. That led to a CT scan and eventually a diagnosis of Hodgkin’s lymphoma in February of 2015. His rare diagnosis was the start of an 18-month journey for Mitchell where playing football again was always on his mind, but knew his priority had to be fighting off his rare cancer and getting healthy. He returned to campus early in 2016, and was cleared to play just before the start of camp.

With a new coaching staff in place at Iowa State, and most of his former teammates gone, all Mitchell wanted was an opportunity. And he was promised that was all he would get. Mitchell not only earned a starting spot after 18 months away from the game, he was named a team captain and played all season at defensive end registering nearly 30 tackles.

Michael grew up a huge Michigan Wolverines fan and always dreamed of playing for the maize and gold. He didn’t have any FBS offers coming out of high school, but was recruited to play at Harvard. While playing junior varsity as a freshman in 2001, he was diagnosed with Wegener’s disease, a rare disorder that causes inflammation of the blood vessels in your nose, throat, sinuses, lungs and kidneys. He never played football again for the Crimson Tide but graduated from Harvard in 2014 and took a job on Wall Street.

After two years at his job, Michael was feeling better and the itch to play football never left. He decided to give it one final shot, and if he was going to take a shot, Michael was going for it all. He set his sights on Michigan. The school had to accept him, the Wolverines program had to give him a tryout, his employer had to release him on sabbatical and the NCAA had to clear his eligibility. 

In January of 2016, he cleared one big hurdle when he took an unofficial visit to Ann Arbor and met with Wolverines head coach Jim Harbaugh and shared his story. Harbaugh offered him a spot on the team as a preferred walk-on. In his very first game in Michigan colors, the 2016 season opener against Hawaii, Michael caught a 15-yard touchdown pass.

When most players receive a scholarship offer from Notre Dame, and they want to play for the Fighting Irish, the decision to pack up and head to South Bend is pretty easy. That was not the case for Dexter. In order to pursue his dream of obtaining a degree from Notre Dame and to play for the Fighting Irish, the native of Orlando had to leave his Mom’s side.

Dexter’s mom Cheryl was diagnosed with myasthenia gravis following a series of strokes in 2006.  The Williams family has endured the fight with this rare disease together for more than a decade. And in 2010, Cheryl nearly lost her battle with myasthenia gravis.

Dexter came home from school and as he bent down to give his mother a kiss, he found her unconscious laying on the couch. Cheryl was rushed to the hospital and spent nearly three months on life support. Their bond was tight, but Dexter went to Notre Dame. In 2016 Cheryl was well enough to attend a game in South Bend and saw her son score a touchdown. After he crossed the goal line, Dexter pointed right at his mom who was crying in her seat.

Kaleb traveled halfway across the country from Arizona to Pennsylvania to attend college and play football because he was convinced that, no matter what happened with football, he would have an Ivy League education from Penn to fall back on. Little did he know that decision would turn out to be one of the best of his young life.

The wide receiver was working out during a study break during finals week late in 2014 when the right side of his body started to feel “funky”. Then when his whole face went numb and his one arm went totally numb and he couldn’t lift it, his concern escalated. Originally diagnosed as a stroke, Kaleb went through a series of MRI’s CT scans, spinal taps and blood work before he was eventually diagnosed with relapsing-remitting multiple sclerosis.

His football playing days were over, but Kaleb approached the coaching staff and asked if he could stay involved with the team. He was made a student-coach as part of the staff and did a little bit of everything during Penn’s 2015 magical ride to a share of the Ivy League title.

Ju’Juan and his wife, Brandi, are no different than any other parents. When their son was diagnosed with Hodgkin nodular lymphoma in early 2015, the Seider’s became a family on a mission to help Jaden in any way possible to battle his rare form of cancer.

Jaden spent nine weeks in the West Virginia University Children’s Hospital right across the street from the Mountaineers stadium. Learning from the inside about the staff and people at the hospital inspired Ju’Juan and Brandi to do more and help other families in similar situations.

The West Virginia football team, where Ju’Juan was a coach at the time, became a strong support element for the Seider family, helping to bring awareness to rare cancers. This was still about Jaden and his battle, but, through this, the Seider’s learned they had a platform that could be used to help others.

Jake and his story was already known nationally before he arrived at USC as a student in 2015. A huge USC Trojans fan growing up, Jake developed a relationship with former Trojans coach Pete Carroll just prior to having surgery that would take away his eyesight in 2009 at the age of 12. Jake was diagnosed with retinoblastoma when he was born and had lost sight in one of his eyes when he was just 10 months old.

Jake never let being blind define him.

He continued to flourish growing up despite his loss of sight, and he worked tirelessly to become a long snapper for his high school football team. And he longed to fulfill his dream of playing for his beloved Trojans. Jake was granted walk-on status and continued to re-shape his body to get ready in case his number was called. In the 2017 season opener against Western Michigan, Jake became a USC football letterman by snapping for an extra point against the Broncos.

Jake graduated from USC in 2018 and continues to be a leader in the fight against retinoblastoma by raising funds to support cutting edge research as well as becoming a business entrepreneur.

It took Marcus’ doctors three surgeries to finally figure out what the UCLA Bruins defensive back was up against. His condition, Aspergillosis, was extremely rare and deadly. Rios was told that of the 12 previous confirmed cases similar to his, 10 had ultimately died of the disease. It quickly became apparent Rios was in a fight for his life.

Initially Marcus believed he had a sinus infection, but his symptoms and pain escalated to the point where sleep was impossible. It was hard to even see and Marcus could barely get out of bed. The doctors at UCLA Medical Center made it clear to Marcus when he was admitted that his life was in serious jeopardy. Marcus spent 28 days in the hospital, lost nearly 50 pounds, but survived.

His room in the hospital overlooked the Bruins’ football practice field and kept him motivated. He came back bigger and stronger for the 2015 season and earned a starting cornerback spot, playing in all 13 games. His story was featured on the television series “Monster Inside Me” on Animal Planet.

Zachary battled stomach issues during Liberty football summer workouts prior to the 2014 season. Originally diagnosed with an infection, Zachary knew it was more when his symptoms escalated and the linebacker lost nearly 40 pounds over six weeks.

He returned home to Maryland and secured an appointment at Johns Hopkins where ultimately Zachary was diagnosed with the rare disease Ulcerative Colitis (UC). The shock of his diagnosis was compounded when doctors told him he had the more severe type of UC, so his treatment protocol was going to take some time, and not being able to play football ever again was a real possibility. Returning to the field drove Zachary, though.

His monthly treatments and flare-ups, where some mornings it was difficult to get out of bed and it wasn’t uncommon to lose up to 10 pounds in a week, did not prevent Schreiber from getting back on the field. He played the second half of the 2014 season and finished off his senior season in 2015 by playing in every game.

Mitchell had positioned himself to become a big-time contributor for the Iowa State defense following his redshirt sophomore year in 2014. He had two years of starting at defensive end and also played some snaps inside along the line. He was versatile, experienced and had two years of eligibility remaining. 

During the offseason, swelling in his neck escalated into what Mitchell described as a feeling of being choked. That led to a CT scan and eventually a diagnosis of Hodgkin’s lymphoma in February of 2015. His rare diagnosis was the start of an 18-month journey for Mitchell where playing football again was always on his mind, but knew his priority had to be fighting off his rare cancer and getting healthy. He returned to campus early in 2016, and was cleared to play just before the start of camp.

With a new coaching staff in place at Iowa State, and most of his former teammates gone, all Mitchell wanted was an opportunity. And he was promised that was all he would get. Mitchell not only earned a starting spot after 18 months away from the game, he was named a team captain and played all season at defensive end registering nearly 30 tackles.

There is this unique passion and tone when a parents talk about the first time they saw their newborn child. It was nothing different for Quinterrius Eatmon and his wife, Melyza, nearly two years ago. Only difference for the Eatmon’s was their daughter, Melaynna Savannah, could not see her parents.

The diagnosis for the Eatmon family seemed so cut and dry. Their daughter had Septo-optic dysplasia and nearly 95 percent of children diagnosed with this rare disease that affects only 1 in 10,000 newborns, need to learn braille in order to communicate. Plus little Melaynna Savannah, who already could not see, also had Nystagmus — which is rapid, uncontrollable movements of the eye that caused the baby to panic when not in the arms of her mother.

Being a student and athlete was extremely difficult for Quinterrius. Leaning on his faith, Quinterrius graduated from USF with a degree in economics in 2014 and finished his playing career starting 46 of 47 games he played for the Bulls along the offensive line. Surgery for his daughter delivered a miracle as Melaynna Savannah reacted to a camera flash and seemed to follow light to give her hope for the future.

It took Marcus’ doctors three surgeries to finally figure out what the UCLA Bruins defensive back was up against. His condition, Aspergillosis, was extremely rare and deadly. Rios was told that of the 12 previous confirmed cases similar to his, 10 had ultimately died of the disease. It quickly became apparent Rios was in a fight for his life.

Initially Marcus believed he had a sinus infection, but his symptoms and pain escalated to the point where sleep was impossible. It was hard to even see and Marcus could barely get out of bed. The doctors at UCLA Medical Center made it clear to Marcus when he was admitted that his life was in serious jeopardy. Marcus spent 28 days in the hospital, lost nearly 50 pounds, but survived.

His room in the hospital overlooked the Bruins’ football practice field and kept him motivated. He came back bigger and stronger for the 2015 season and earned a starting cornerback spot, playing in all 13 games. His story was featured on the television series “Monster Inside Me” on Animal Planet.

Levi was back for a visit at his high school alma mater, Midway in Waco, Texas, and was at a football game the first time he met Jacoby Burks and his family. Jacoby battles cerebral palsy and is confined to a wheelchair. Levi didn’t want their chance meeting to be just a one-and-done . He figured why not welcome a friend from his high school into his current family at Baylor University where he was a wide receiver and kick returner for the Bears.

For the next three years, whenever it worked for all parties involved, Levi and his teammates welcomed the Burks family to Bears’ practices and games. 

A former friend from his days in State College, Pennsylvania,  inspired Levi to take his relationship with Jacoby to the next level. Sam Rodgers, now at Syracuse, had co-founded the Syracuse Chapter and told Levi he should do the same at Baylor because the team already had a rare disease cause.

Levi agreed and founded the Baylor Chapter of Uplifting Athletes in 2013 and helped guide the Bears’ Chapter to holding its first events to support the Rare Disease Community in 2014.

Levi Norwood is currently the Chapter Success Manager for Uplifting Athletes.

When Sammie, a former Auburn wide receiver, saw then 12-year-old Kenzie Ray sitting by herself after a game in 2013 as he left the stadium locker room, he didn’t know her story. But he knew that look in her eyes and the big-time talent in the midst of a breakout season didn’t hesitate to walk over and strike up a conversation. Out of that conversation he learned Kenzie was battling a horrible rare form of leukemia. The wristband Kenzie gave Sammie after that brief encounter was the first step in what would blossom into a genuine kinship.

The summer of 2014 was an extremely difficult time for Kenzie and the Ray family. She was battling pneumonia following a recent round of chemotherapy that significantly compromised her immune system. Doctors said Kenzie might not make it through the night. So Kenzie’s mom Keisha called Sammie to give him an update. Three hours later, to the surprise of the Ray family, Sammie was at the hospital holding Kenzie’s hand and praying – assuring the family he believed she was going to make it. And she did.

Sammie finished his career at Auburn, was drafted in the third round of the 2015 NFL Draft by the Pittsburgh Steelers and played in the NFL for five-plus years while maintaining his friendship with Kenzie and the Ray family.

Greg and fellow coach Kim Dameron already had a decade of friendship under their belts when they were the offensive and defensive coordinators at Stephen F. Austin starting in 2001. Each went their separate coaching ways in 2005, but when Kim was hired as the head coach at Eastern Illinois in 2014, one of his first calls was to Greg to see if his old friend would be his offensive coordinator. Even though Greg was coordinating an offense at Southeastern Louisiana that was Top 10 in FCS scoring in 2013, the draw of friendship was too strong to pass up, so Greg took over the OC at EIU.

Only months after taking over as the offensive coordinator at his new school, Greg was diagnosed with non-Hodgkin’s large B-cell lymphoma in June. His diagnosis was scary, but Greg was determined to still do his job to the best of his ability.

Chemotherapy treatments started right away and lasted until early October. But Greg made sure he didn’t miss a single practice or Eastern Illinois game while undergoing treatment - all with his close friend and boss at his side

Dan was the Director of Football Operations in 2010 when the University of Minnesota hired Jerry Kill as the head coach. O’Brien and coach Kill formed a close relationship over the next few years. As the Golden Gophers prepared for the 2013 Texas Bowl, the team doctors thought it would be a good idea to have Coach Kill in the room when they informed Dan and his wife Chris that their son, Casey, had osteosarcoma, a rare form of bone cancer. (Casey O’Brien would become a member of the 2018 Rare Disease Champion class.)

The initial treatment plan for Casey required a nearly 100-day stay in the hospital, seven hours of surgery to remove the cancer and a complete knee replacement followed by 24 rounds of chemotherapy. Dan and Chris didn’t want to leave their son alone. So mom, Chris, took the day shift and Dan was on duty at night.

Even when his job required him to travel out of town, he would make it a day trip and fly back home to be with his son. No matter what was required of him, Dan made sure he was there every night.

Chuck, Stony Brook’s veteran head coach of more than a decade, was more than willing to make a difference in the life of a rare disease patient when a former college football teammate asked him for a favor that didn’t require anything more than saying yes. Chuck’s former college football teammate at Albany, Dennis Murphy, introduced the Seawolves’ skipper to Joey Feminella from West Islip, New York in 2009 through Friends of Jaclyn.

Joey was diagnosed with medulloblastoma at the age of 5, an aggressive form of pediatric brain cancer with a survival rate in the teens. After surgery and three years of radiation, Joey met Coach Priore and the Stony Brook team and became part of the program.

It took some time for Joey to warm up to being part of the team, but the inspiration he received from them developed into a lasting friendship for nearly a half-decade. All Chuck had to do was say yes to an old friend to make it happen.

Like plenty of boys from Texas, Case dreamed of playing big-time college football one day. Unfortunately Case wasn’t like most other boys. That didn’t stop Case from dreaming. 

At the age of four, Case was diagnosed with a form of the rare disease scleroderma. The type of scleroderma, a disease that involves the hardening of the skin and tightening of connective tissues, Case was diagnosed with, morphea, is usually found in adults not pediatric patients.

The first few rounds of treatments on what became a regular trip from West Texas to Dallas for Case, his father Brad and mother Debra, didn’t slow the disease. And the side effects were brutal as Case started losing weight, didn’t want to eat and started losing his hair. Eight more months of weekly shots administered by Brad on Wednesday nights after church caused Case to get violently sick and nauseous every time.

In 2004, eight years after his diagnosis, Case was told his battle with a rare disease was finally over. Shortly after being told he didn’t need those shots anymore, 12-year-old Case, who went on to become the starting quarterback for the Texas Longhorns in 2013, was watching ESPN Gameday one Saturday morning. After seeing one of those inspirational stories that has become part of the package for the lead-up to college football Saturday, Case turned to his Dad and told him one day he was going to have a story to share.

C.J. is one of those individuals who doesn’t have an inherent big-stage bone in his body. After all, his chosen position on a college football field for the University of Nebraska was fullback. The best fullbacks embrace life in the shadows. Diversely talented, but willing to sacrifice and serve others first to further the bigger cause is part of the DNA of those who choose to play the position. That’s Zimmerer in a nutshell.

While serving as the Nebraska Chapter President, C.J. and his teammates had an idea the night before the Huskers’ annual spring game. The idea was refined by the Nebraska football staff and it involved getting then 7-year-old pediatric brain cancer patient Jack Hoffman, a huge Huskers fan, in the game.

On a beautiful spring afternoon in April of 2013, Jack’s 69-yard run moved a nation to the tune of nearly 10 million views of the video on YouTube. Jack won an ESPY for “Best Sports Moment” in 2013. The Hoffman family paid a visit to the White House for a meeting with then President Barack Obama and put rare pediatric cancers on a national stage

During the offseason between his junior and senior year at the University of Utah, the versatile linebacker/defensive end saw his world turned upside down when Trevor and his wife Jessica found out their 11-month old daughter, Shayn, was diagnosed with kidney cancer. Trevor said playing through his junior season with a torn ACL was easier than watching his 1-year-old daughter battle kidney cancer.

Following surgery to remove a tumor from his daughter that Trevor says was the size of his fist, the Reilly’s spent every Friday over the next four months taking their daughter to chemotherapy treatments. Then Trevor would head to football practice, battling internally where his focus should be. It was a rugged treatment protocol, but Trevor’s strength and courage never wavered. He remained committed to his family and his teammates.

Before the final home game of his senior season, Trevor let everyone know who the real fighter was in his family when he entered the field with Shayn on his shoulders

As the head football coach at first Florida State and then Texas A&M, Jimbo is all about winning and finding ways to overcome obstacles to win. Ever since his youngest son, Ethan, was diagnosed with the rare blood disorder Fanconi anemia in 2011, what it means to win has taken on a whole new meaning for the National Championship winning coach.

As a way to not only support his son in his rare disease battle, but for all Fanconi anemia (FA) patients, Jimbo and his family worked together and formed a team to start a national foundation called Kidz1stFund in August of 2011 to support Fanconi anemia patients by funding research. Jimbo knew his platform as a major college football head coach was an avenue to spread the word about FA and raise awareness.

In support of his coach’s family, former FSU tight end Kevin Haplea formed an Uplifting Athletes chapter in Tallahassee to honor the Fisher family and let them know the players cared. Jimbo said what Kevin did “caught him off guard” but said it was “touching."

Andrew displayed the passion and desire to make a difference for the rare disease cause when the offensive lineman started the Fordham Chapter of Uplifting Athletes in 2011. What he didn’t know through this work was how important this cause would become when it became personal.

Ty Campbell was not quite three when he was diagnosed with the tumor found on his spinal cord. With a contagious smile, he was a perfect fit. He may have only been pint-sized, but he showed the Fordham football team how to battle with heart. Ty was an inspiration for the team and the Fordham squad was rallying around his cause as they embarked on the 2012 season.

Then came the devastating news that Ty was losing his battle and was headed into Hospice before eventually passing on October 12th, less than two weeks before his fifth birthday. Andrew’s biggest takeaway from this experience was he felt lucky to have met Ty and his loss shook his soul. Knowing he still wanted to be involved in the rare disease cause, despite the pain, and help others was a life lesson he will carry with him for a long time.

Following an outstanding season in which he earned All-California honors as  at College of the Redwoods, Dillon went through a transformation of his body and psyche that coaches, friends and family couldn’t understand. He went from a muscular 320 pounds to 380, developed symptoms of bipolar disorder, and finally became a near vegetable, suffering from what appeared to be severe clinical depression. As he went in and out of hospitals, no firm diagnosis was reached.

Most of his close friends and family thought he was abusing drugs. Dillon was adamant in his denial of abusing drugs, but also knew something was very wrong. During his struggles, Dillon also developed diabetes, which actually helped his family doctor reach a diagnosis. During an appointment for diabetes monitoring, the doctor suggested that Dillon might have a rare disorder called Cushing’s disease. A scan revealed a huge tumor wrapped around his heart and left lung, one that had developed the ability to excrete the hormone cortisol, resulting in his erratic behavior and body changes. Open heart surgery removed the tumor, but his left lung was now useless.

Determined to continue his football career at Humboldt State, Dillon reported to training camp in August only four months after surgery. With a single functioning lung, he started all 11 games that season, and was named to the All-Great Northwest Athletic Conference team.

The combination f being able to do something to support a rare disease that was personal to him and to get involved in something with teammates was what drove Eric, an offensive lineman, to become a chapter leader at Penn State. Already involved as part of the Penn State Chapter Lift For Life, Shrive returned home to Scranton, Pa. in the summer of 2011 to find out his uncle had been diagnosed with kidney cancer. Supporting the Rare Disease Community took on a whole new meaning to Eric that summer.

A marketing major, Eric was determined to use what he was being taught in the classroom in the real world and was determined to raise as much money as possible to support a cause that had become more personal. His goal became to raise $100,000 before his Penn State career was up.

After serving two years as the PSU Chapter Vice President, Eric stepped into the role of President and led by example in his quest to not only inspire his teammates to do their very best, but to also reach his career fundraising goal in order to provide a lasting impact on the Rare Disease Community.

Between his freshman and sophomore year at Florida in 2010, the linebacker from Georgia was diagnosed with a rare condition known as arteriovenous malfunction (AVM),  a condition where blood vessels in the brain get tangled and rupture. AVM is often fatal. Neiron required several risky surgeries and a prolonged recovery, most thought he would never play football again.

During recovery, it became apparent to Neiron that football was a gift and there was no guarantee he would ever play again.  As part of the recovery process, Neiron took a year off from football.  It was a long year, filled with MRIs and tests to ensure the procedure had worked.

Because playing football posed no greater risk of a recurrence of his AVM, Neiron returned to the field for the Gators in 2012 and played in 12 games with a pair of starts. The experience provided Neiron a completely different perspective on playing college football and his life in general

Frankie was a highly-recruited linebacker out of Miami who eventually chose USC and was projected to see major playing time as a true freshman with so many seniors graduating. This was the dream scenario for Frankie until a heart murmur was detected at football camp. More tests were run and it was determined Telfort had hypertrophic cardiomyopathy, a condition that results in an enlarged heart and makes prolonged exertion potentially fatal.  Telfort has a rare form of the condition that was severe enough to sideline him for good.

The risk of playing was too high. Frankie would never be cleared by doctors, plus the probability of sudden death was extremely high. Instead of walking away completely and possibly leaving USC , Frankie stuck with football in a different capacity.  He became a student-coach.

Frankie spent four years on the sidelines at USC, learning the intricacies of coaching and helping some of his former teammates on the field. The biggest lesson he learned was don’t plan for your future, have options.

One morning when he was 8-years old Chris couldn’t get out of bed for breakfast. He couldn’t move. That’s how sudden it was. His parents rushed him to the hospital, and despite a battery of tests the doctors could not determine what was wrong. His parents were told he might die. The hospital in North Carolina flew in a specialist from New York and he was able to diagnose Chris with the rare neurological disorder Guillain-Barre Syndrome.

His ability to walk and talk was severely impacted. The treatment and recovery process for Chris was grueling. He spent the better part of a year in a wheelchair or using a walker and spent two years learning how to walk and talk again. There is no treatment or cure for Guillain-Barre Syndrome, but Chris was determined to return to his version of a normal childhood and that meant playing sports again.

Chris managed his syndrome and was safely cleared to resume his version of a normal childhood after three years of recovery. He was able to play sports and eventually became a starting safety at the United State Naval Academy. He shares his story with others and serves to inspire others through his journey. His message is always the same: do your best to remain positive

Austin was preparing for his senior season as an offensive lineman for the Oklahoma Sooners when he noticed an unexplained constant sore throat during spring ball. Then the glands in his neck became swollen and sore. He went to the team trainer to get it looked at, and following a series of screens and tests Austin was diagnosed with Stage 3 Hodgkin’s lymphoma. Less than two weeks after spring practice ended, Austin started his treatment protocol of 12 rounds of chemotherapy.

Facing that strong of a chemotherapy regimen spread out over six months, Austin figured he would have to put football on the back burner and take a redshirt season. Halfway through his treatment protocol he knew the chemo was impacting him, but he didn’t feel football was off the table. He wanted to play this season.

While that sounds impossible, consider this: somehow, through all the chemotherapy, Austin never lost his hair and actually gained weight. During the season, he scheduled his chemo treatments on Monday, giving his body time to recover by Saturday.  He never missed a game and only missed practice on treatment days. His journey truly inspired others.

Inspired by the battle he watched his offensive coordinator go through with his rare disease diagnosis, the offensive lineman for the Wolfpack felt a call to action and founded the NC State Chapter of Uplifting Athletes in 2011. The connection with coach Dana Bible was so strong, the players wanted to do something to help others battling rare diseases and Wayne took the lead.

The opportunity to be a champion for the rare disease cause was important to Wayne and his teammates, but they didn’t know what to do. Finding Uplifting Athletes and starting a chapter was an ideal way to show their coach what he meant to them and to help others as well. Wayne called it a “blessing.”

When Wayne started the NC State Chapter, his hope was that the chapter would become an integral part of the Wolfpack football program and continue well past his days as a student-athlete. The NC State Chapter is still going strong today and continues to serve the Rare Disease Community.

Prior to his junior year in high school, Luke was training during the offseason and thought he had a typical nose bleed from working out. He was rushed to the emergency room when the bleeding wouldn’t stop and after getting treated he went to his family doctor the next day and his physician said he should get some blood work done. The test revealed his blood platelet level was a seven instead of the normal 140 so he was given a bone marrow biopsy immediately. The results revealed Luke had the rare blood disorder aplastic anemia.

Luke needed bone marrow transplant surgery but first they had to find a donor. Since he is mixed race, finding a donor was most likely going to be tricky. In the end it wasn’t. Luke has four younger brothers and two of them are identical twins and they were each a match. After four months in quarantine he had the surgery and his recovery was so quick he was back with his team 10 months later.

Playing college football was always a dream for Luke and he felt being diagnosed with a rare disease inspired him to push even harder to make his dream a reality. He walked on at UCLA, earned a spot on the travel roster his second year and continued to advocate for the Rare Disease Community by using his platform as a college football player to share his story.

David, a native of Gainesville, Fla., was diagnosed with Crohn's disease just weeks before beginning fall training camp for the Florida football team. Despite losing nearly 15 pounds and having to receive IV treatments, David didn't miss a practice during fall camp. He was determined to push through his diagnosis and chase his football dream.

Crohn’s disease is a rare chronic inflammatory bowel disease that affects the lining of the digestive tract. Crohn's disease can sometimes cause life-threatening complications.Crohn's disease can cause abdominal pain, diarrhea, weight loss, anemia, and fatigue. Some people may be symptom free most of their lives, while others can have severe chronic symptoms that never go away.

David battled through his diagnosis and earned the starting punting job for the Florida Gators and was awarded a scholarship. He also received the Dick Schapp Sportsman of the Year Award.

Rex didn't realize an innocent lunch with a stranger would have such a huge impact on his life. Until he met a young Huskers and Rex fan named Jack Hoffman. Jack had just recently been diagnosed with a rare pediatric brain tumor called low grade glioma. Jack’s ultimate dream was to meet the Nebraska running back. Rex made sure that happened.

Andy Hoffman, Jack's father, says Rex took an interest in Jack and almost instantly they became buddies. And the cause became personal for Rex. He wanted to help and encouraged his teammates to wear wristbands for a game in honor of Jack.

Rex followed up with Jack numerous times on the phone and in person, even calling Jack days before a second scheduled surgery in Boston. It meant the world to Jack, knowing that Rex cares so much.  The Hoffmans are confident that Rex made a difference in their son's life. Rex went on to a successful NFL career including winning a Super Bowl with the New England Patriots, continues to be involved in Jack’s life and supports the Hoffman family.

In the summer of 2009, Scott was the quarterback for the Wisconsin Badgers when he met Jaxson Hinkens and learned the young man had high-risk, stage 4 neuroblastoma. Jaxson's uncle had promised him a Badgers football helmet autographed by all of the quarterbacks. The school went one step further and brought Jaxson down to the field and introduced him to the players. 

Jaxson and Scott immediately hit it off. Scott called him after games, visited him in the hospital and other players began to build relationships with Jaxson, too. Jaxson's treatment plan was a grueling 15-month journey that included high-dose chemotherapy, radiation, surgeries, a stem cell transplant and immunotherapy. 

After his initial treatment, he was a healthy, athletic kid for three-and-a-half years. But all that changed when the cancer returned. And Scott was still there for him. Through the painful ordeal, the friendship of Scott helped lift Jaxson and his family.

Jerry was diagnosed with the rare disease kidney cancer during his tenure at Southern Illinois University. Jerry started Coach Kill Cancer Fund to assist low-income Southern Illinois residents with medical costs because of cancer or other childhood diseases.

He established the Kill Cancer Fund in 2006 because he said he didn’t want his legacy to be what he accomplished on the field. He wants to continue to inspire people battling cancer. 

Jerry left SIU after that season and became the head coach at Northern Illinois before moving on to become the University of Minnesota head coach in 2010.

Jordan spent an entire fall inspiring his teammates and fans of both the Princeton football team and the rest of the Ivy League. Clearly, though, his story of perseverance reached far beyond the Ancient Eight. The running back was a two-time All-Ivy selection and made a triumphant return to the field after a grueling battle with the rare blood disorder aplastic anemia.

Jordan learned of his illness following a sprained ankle suffered during the second game of the 2009 season. After several months of treatment, Culbreath returned to the for his senior year. 

His courage and determination inspired his teammates, and he was named the team's co-captain during his final year with the Tigers. Culbreath was also an inspiration to the Rare Disease Community, reaching out to other players, families and complete strangers who were touched by his story. Jordan will have to take medication and receive treatments to monitor his rare blood disorder the rest of his life.

Derrick’s hearing problem was apparent at a very young age when his parents noticed he didn’t respond to them like a typical 3-year-old and that his speech was slow to develop. Doctors tested his hearing and determined it was impaired. The reason for his hearing loss was genetic. Derrick’s father and mother were missing hearing genes. The result was the absence of a key hearing gene for their son.

His hearing continued to regress until middle school where it leveled off and Derrick became more accepting of his hearing loss and embraced the use of his hearing aids as a tool to help. Sports was always a big part of his life and Derrick simply adapted and overcame his inability to hear to continue moving forward. In his mind he said it was like wearing glasses to help see better.

Derrick had a tremendous career at UCLA as a running back. He played in 48 games, rushed for more than 1,700 yards and scored 19 touchdowns. His senior year he was named second team All-Pac 12. Derrick went on to become the first legally deaf offensive player in the NFL, played for six years with four teams and won a Super Bowl with the Seattle Seahawks.

Dana was the offensive coordinator for the NC State Wolfpack when in the middle of the season on a November night just before Thanksgiving he was told he had acute promyeloctyic leukemia. That week NC State was scheduled to play Virginia Tech on the road. As the team departed for Blacksburg, Dana was taken to the hospital for the start of a 30-day regimen of intensive treatment.

The follow-up treatment came later and included chemotherapy five days a week for five weeks during the Wolfpack’s spring practice the following year. Dana was determined not to miss a practice, so after his treatment he would show up and give his players the best he had.

Through it all Dana never surrendered any of his responsibilities as the offensive coordinator, quarterbacks and wide receivers coach. His presence at practice and determination to keep moving forward served as an inspiration to the entire team.

Wilson, an offensive tackle for the Tulsa football team, thought he was just out of shape. He was winded during spring workouts and was disappointed that he was struggling so much at practice. What Wilson didn't know is how his life was about to change. His offensive line coach, Herb Hand, thought something wasn’t right with his pupil so he insisted Wilson go see a doctor. 

Coach Hand was right. Wilson had a softball sized tumor growing on his chest. He was diagnosed with Hodgkins Lymphoma, a cancer of the immune system. Wilson started a treatment plan immediately that included chemotherapy, but he never missed a beat. Wilson couldn't participate in Tulsa's spring football practices, but he was determined to not miss the 2008 season. One of the first questions he asked his doctors was “could he play again”. The answer was yes if his treatments went as planned. 

Wilson credits his strong support system for keeping him upbeat. His teammates would help with missed school work, some even shaved their heads as a way of paying tribute to Wilson.

Matt was a two-sport standout at Villanova on the football field and the baseball diamond. He was a highly-sought after professional prospect in both sports. On the football field he was an impact player at wide receiver, running back, wildcat quarterback and  return specialist on special teams. During his junior season, Szczur was a consensus All-American and was named the CAA Offensive Player of the Year as Villanova went on to win its first-ever FCS National Championship. In the 2009 NCAA Division I Football Championship Game, he gained 270 all-purpose yards and was awarded MVP honors.

All of those accolades pale in comparison to his willingness to give it all up if it meant having the opportunity to save the life of a young leukemia patient he had never met. Matt registered for the National Marrow Donor Program during one of the annual registry drives held on campus and sponsored by Villanova football coach Andy Talley. Though the odds of being a match are just 1-in-80,000, Szczur was identified as the perfect match for a patient.

Matt donated bone marrow to a 15-month-old Ukrainian girl named Anastasia battling leukemia. He essentially helped save her life given the severity of Anastasia’s condition and how hard it would have been to find another person that was a match for bone marrow. Matt’s story was documented by ESPN in one of its E:60 episodes.

Tom was diagnosed at 17 years old with a rare disease called sclerosing cholangitis at the same time he was chasing his dream to play major college football. He has the same deadly liver disease that took the life of NFL Hall of Fame Chicago Bears running back Walter Payton at the age of 45. His prognosis is better though because he was diagnosed at a much younger age than the average patient with this disease, but eventually at some point in his life, he will require a kidney transplant.

Continuing to play football at the next level despite his diagnosis was very important to Tom, who had two brothers play at Northwestern. Tom had only one offer coming out of high school so he chose instead to walk on at Penn State and continue the family tradition of playing in the Big Ten.

Tom played mostly on special teams during his career, but just being able to play was all he ever wanted. He came to the conclusion his diagnosis with a rare disease was all about using his platform to raise awareness for his rare disease and help other people.

The quarterback from Malvern Prep High School in suburban Philadelphia went to play his college football at NCAA Division III Dickinson. Ian was inspired by a childhood friend who passed away from a rare form of bone cancer.

Ian felt compelled to do something about the rare disease cause so he set out on a path to raise funds in honor of his friend. Ian ended up raising more than $95,000 during his playing career to serve as an inspiration, showing others what one person can do to make a difference.

Stanley saw his promising football career at Clemson come to an abrupt end during the summer of 2009 as the linebacker prepared for the upcoming season. Stanley was diagnosed with a rare form of epilepsy in 2004 and his medications were no longer helping and his seizures related to his epilepsy were on the rise. He changed medications and underwent a battery of tests, but Stanley knew once the results came back he had to make a tough decision

His body was rejecting the medication and the only way to tell whether or not the medication is helping is when it doesn’t work. That was the reality. So Stanley sat down with his father, grandfather and Clemson coach Dabo Swinney to have a difficult conversation about his future. He chose to step away from the game he loved.

Getting his degree and being healthy were what mattered the most, but it was still an agonizing decision for Stanley. He only told his closest friends, but eventually decided to stay with his teammates and be on the sideline as a student-coach his final season.

When Grant was named Executive Director of the American Football Coaches Association in February 1994, he approached his new role as a coach, by formulating a master game plan. For over a quarter century, Teaff has executed that plan at a championship level, and in the process became one of the most effective administrators in intercollegiate athletics. His outstanding career as a college coach has placed him in eight Halls of Fame, including the Texas Sports Hall of Fame and the College Football Hall of Fame.

Grant was involved in national issues as a coach and as an administrator. As Executive Director of American Football Coaches Association he is involved in every issue that affects the college game, and has become a strong spokesman for the game of football.

He was chosen as the inaugural Rare Disease Champion for his work on behalf of the AFCA and its nationwide effort to raise awareness for the rare disease Duchenne Muscular Dystrophy through the one-day event on a college football Saturday called “Coach to Cure MD.”