Uplifting Athletes Executive Director Rob Long has been chosen as a 2021 Rare Impact Award honoree by the National Organization for Rare Disorders (NORD).
The Rare Impact Awards celebrate the individuals, groups and companies making extraordinary strides on behalf of the millions of Americans impacted by rare disease.
“Despite the pandemic and the challenges we have faced, there are still heroes to be found among us from whom we can draw inspiration and motivation to keep moving forward,” said NORD President and CEO Peter L. Saltonstall. “At NORD, we are proud to honor these people, groups and companies for their achievements. We’re humbled to work alongside them and appreciative of their tenacity and commitment to a brighter future for our community.”
Rob and the rest of the 2021 honorees will be celebrated on June 28 during a live streaming event that starts at 7:00 p.m. EST.
Rob is a rare disease patient who had his life turned upside down more than a decade ago when he was diagnosed with a rare and aggressive form of brain cancer called anaplastic astrocytoma. His prognosis at the time was less than encouraging, and his surgery, recovery and treatment took 16 months. An All-American punter at Syracuse, Rob was on a path to the NFL when he was diagnosed and lost out on that opportunity.
After joining Uplifting Athletes in 2016, Rob took over as the second Executive Director in the organization’s history late in 2018. In his more than two years as the Executive Director, Rob has advanced the impact Uplifting Athletes has on the Rare Disease Community significantly on two fronts.
First, as a patient, he has the perspective that allows the organization to actively use their resources to engage with patients, families and caregivers on a deeper level to inspire them with hope.
Secondly, he has been largely responsible for expanding Uplifting Athletes’ commitment to funding research through the Young Investigator Draft. When Rob took over as Executive Director, the Young Investigator Draft was just getting started. Because of Rob’s unique and personal experience as a patient himself, he has charted a new and innovative way to support rare disease research.
Under Rob’s guidance, Uplifting Athletes has provided more than $300,000 in funding to 18 different rare disease researchers through its first three Young Investigator Drafts. From year No. 1 to year No. 2 the amount of each individual grant doubled, and in 2021 the organization committed to expand the number of grants it provides and established the Underrepresented Researchers in Medicine initiative to ensure underrepresented minority researchers are funded and celebrated through the Young Investigator Draft.
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.”
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
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
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
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
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
Northwestern capped off a memorable 2020 season by winning its fourth consecutive bowl game with a victory over Auburn in the Citrus Bowl. The Big Ten West champions used an offensive explosion that produced the most passing (291) and total yards (457) this season.
Wildcats linebacker Paddy Fisher posted a game-high 12 tackles to become the sixth NU player to clear the career 400-tackle plateau. The last Northwestern player to eclipse 400 was current Wildcats linebackers coach Tim McGaricle (2002-2005).
Northwestern Chapter Vice President, defensive tackle Joe Spivak, recorded his first tackle for a loss and sack of the season. He started the final eight games for the Wildcats and finished the season with 14 tackles.
Clemson: The Tigers’ 125th season came to close at the hands of Ohio State in the Sugar Bowl as part of the College Football Playoff. Clemson finished 10-2 overall, won another ACC title and made its sixth consecutive appearance in the College Football Playoff. It was the first time Ohio State has ever defeated Clemson. Quarterback Trevor Lawrence threw for 400 yards and finished his career 34-2 as the Tigers starting quarterback. Clemson Chapter Vice President, punter Will Spiers, averaged a stellar 47.4 yards on five punts.
Notre Dame: The Fighting Irish defense held No. 1 ranked Alabama to a season-low 31 points, but still fell to the Crimson Tide in the Rose Bowl as part of the College Football Playoff. Notre Dame limited the powerful Alabama offense to nine possessions and surrendered only four touchdowns to a Crimson Tide team that came into the contest averaging nearly 50 points a game. Notre Dame Chapter President, linebacker Drew White, tied for the team lead with a season-high nine tackles. Former ND Chapter leader, tight end Brock Wright, played on offense and was also credited with a tackle.
NC State: After falling behind 13-0 at halftime, the Wolfpack rallied in the second half before coming up short against Kentucky in the Gator Bowl. NC State finished the 2020 season with an 8-4 mark that included four consecutive wins leading into the bowl game. NC State Chapter Vice President, tight end Dylan Autenrieth, had a catch for two yards against the Wildcats. Kentucky linebacker Josh Paschal, a member of the Uplifting Athletes 2019 Rare Disease Champion Team, had four tackles and a half sack against NC State.
2020 Bobby Dodd Coach of the Year: Congratulations to Northwestern head coach Pat Fitzgerald for being named the winner of the 2020 Bobby Dodd Coach of the Year. The Dodd Trophy recognizes excellence in a program on and off the field. The Wildcats won the Big Ten West for the second time in three years, had a record 69 players earn Academic All-Big Ten honors, leads the country in graduation success rate (GSR) at 97 percent and promotes player driven service to others including Uplifting Athletes, Dance Marathon, Special Olympics and Misericordia.
Clemson continued its dominance of the ACC, winning its sixth consecutive outright Conference title by controlling fellow chapter school Notre Dame in the championship game.
Tigers quarterback Trevor Lawrence, who improved to 34-1 as a starter, was named game MVP on the strength of his 412 total yards (322 passing, 90 rushing) and three touchdowns. Clemson’s defense limited the Fighting Irish to just 263 yards and recorded six quarterback sacks.
Clemson avenged its regular-season loss to Notre Dame, and both the Tigers and Irish qualified for the upcoming College Football Playoff.
Clemson Chapter Vice President, punter Will Spiers, buried all three of his kicks against the Irish inside the 20-yard line. Chapter President, long snapper Jack Maddox, handled the long-snap duties in all 11 regular season games and twice earned team special teams player of the game honors. Notre Dame Chapter President, linebacker Drew White, finished with two tackles, one tackle for a loss and his first solo sack of the season.
Notre Dame freshman tight end Michael Mayer led the Irish with five receptions, giving him 35 catches this season. Mayer’s 35 grabs are the most in a single season by a Notre Dame true freshman tight end in Irish history, and ranks tenth among all Notre Dame tight ends for single-season receptions.
Penn State: The Nittany Lions finished their season with four straight victories in a wild affair with fellow chapter school Illinois. Penn State and the Fighting Illini combined to score 63 points in the first half – including 42 in the first quarter. Wide receiver Jahan Dotson had a career day with 189 receiving yards including touchdowns covering 75 and 70 yards. Lamont Wade added a 100-yard kickoff return – the first in a Big Ten game for Penn State and the first 100-plus yard kickoff for the Nittany Lions in a decade.
Northwestern: For the second time in three years the Wildcats fell to Ohio State in the Big Ten Championship game. Northwestern’s defense gave the ‘Cats a chance by limiting the Buckeyes to a season-low 22 points and holding the OSU passing game in check. Northwestern led 10-6 at intermission, but the Buckeyes running game caught fire the second half with 300-plus yards on the ground. Northwestern Chapter Vice President, defensive tackle Joe Spivak, started, and finished with one tackle.
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.
He was just 20 years old when he learned his future would be cut short by the same disease that was robbing life from his mother. Seth Rotberg carried that burden alone, until a pair of tragedies showed him the time he had left was best spent honestly and in service to others.
A decade ago, Seth found out he had inherited the gene that leads to Huntington’s disease. The rare, progressive breakdown of the nerve cells inside the brain is characterized as a cruel combination of ALS, Parkinson’s and Alzheimers – all at once. Huntington’s is the quintessential family disease. Every child of a parent with the disorder has a 50-50 chance of inheriting the faulty gene.
Seth was thrust into being a rare disease family member and caregiver at 15 years old when his mom, Debbie, was diagnosed. As he watched her struggle and saw how it impacted their family, Seth couldn’t help but wonder if this was just a foreshadowing of his own future.
“The majority of people don’t get tested prior to showing the symptoms,” Seth said of the disease that usually manifests between the ages of 30-50. “I decided that I wanted to plan my future and I wanted to know what my future would entail. If I had the gene, this could impact my future and how I live my life.”
Genetic testing is a deeply personal decision on so many levels. Do you want to know if you are carrying the gene that will eventually show itself in the form of a difficult, debilitating and life-threatening rare disorder?
That was where Seth found himself a decade ago. Was it better to know and plan or better to not know and see what happens? There was no middle ground when it came to inheriting the faulty gene. Either you have it or you don’t.
Seth wanted to know.
“We all face our struggles at times, myself included. But we all want to live our best life, right? I’m driven to help people understand how to live their best life.”
“Nobody said to me ‘Hey, Seth, do you want to go through this?’ I wanted to plan my future and I wanted to know what my future would entail,” he said.
Seth got the test and with it, tragic results. He had the gene. What came next turned into a private battle.
“I kept this hidden from my family for three years. I only told a couple of my closest friends,” said Seth, who grew up just outside Boston as a huge Celtics fan. “I didn’t want my mom to find out and feel guilty with all she was going through. I didn’t want to pressure my sister to get tested. Everyone has to make their own decision when it comes to genetic testing and that’s deeply personal. I just chose not to tell them.”
Bearing the weight of knowing he possessed the faulty gene associated with Huntington’s disease, and choosing not to tell his family, Seth was struggling to find his purpose. It took not one, but two, life-altering experiences for him to embrace and understand what he needed to do to begin moving forward.
“I was a senior in college, it was the day before my last semester, and a friend of mine died in an off-campus fire. As I tried to understand why it happened and deal with my grief … let’s just say there wasn’t much closure. He was gone too soon,” Seth said.
“I also had a friend who had the juvenile [form] of Huntington’s disease and she passed away shortly after my other friend, at the age of 26. At that time my thoughts kept coming back to they were both gone too soon.
“Meghan was one with Huntington’s disease. She was sharing her story, living her life and doing all she could to help others,” he said. “That’s when I realized I needed to not only lift this extra weight off my shoulders, but ultimately I wanted to do what I can to help other people.”
Once he unloaded the burden about his future as a rare disease patient, Seth shifted his focus to support of young people like himself. His hope is to be a mentor for young people who face adversity by sharing how taking control of his journey has given him opportunity, fulfillment and hope.
Seth’s passion is driven by his mother’s 17-year battle with the rare genetic disorder known as Huntington’s Disease.
More than just sharing his story, Seth has answered the call to become an advocate to use his own experiences as a way to help alter the landscape and empower others inside the rare disease community.
The challenges that face the Rare Disease Community are bigger than any one individual, team or organization can possibly tackle alone. Seth is part of a community, along with Uplifting Athletes, who are working together to shine a spotlight on rare diseases.
“I’ve learned I can’t always be the strong one,” Seth said. “A lot of my passion came from my mom. Unfortunately there wasn’t more I could do to help her. But from that, what I learned is, I want to help people.”
In June of 2019, Seth co-founded Our Odyssey, a nonprofit organization powered by young adults that serves those between the ages of 18-35 living with a rare disease or chronic condition.
“There’s a purpose to Our Odyssey and what we are doing for others and helping them,” said Seth, an avid runner who also enjoys playing video games. “We are making a difference in people’s lives and that’s a great feeling.”
The vision for Our Odyssey is to establish a national organization with a platform that empowers, educates, and connects young adults experiencing health challenges. The values of Our Odyssey are collaboration, empowerment, belonging, hope, purpose-driven and inclusivity.
Seth started Our Odyssey to help others, while also enhancing his ‘why’ at the same time. The conversations and interaction with others like him have become the biggest influence on his life as the clock ticks toward what he knows is inevitable.
One of the tools Seth promotes as a leader, motivational speaker and community connector is helping others discover their ‘why’ in life. Seth found his through the tragic loss of two close friends, which in turn gave him the clarity to know the burdens he was carrying around were not his to bear alone.
“We all face our struggles at times, myself included. But we all just want to live our best life, right? I’m driven to help people understand how to live their best life,” Seth said.
“Because of what I know, I can’t live in the future. I can prepare for the future and that’s important. But I can’t live my best life knowing what I know is ahead for me. I need to make sure I enjoy the moment, enjoy what I have today instead of being focused too far ahead. It’s not a big mystery, my future. Knowing that has helped me serve others better today.”