Believing the impossible was possible fueled Shaquem Griffin to cusp of making NFL history


RARE DISEASE SPOTLIGHT GRAPHICThere are more than 7,000 rare diseases but we are one rare disease community. Regularly, Uplifting Athletes will put one rare disease center stage to give that disease and its community a chance to shine.

Rare Disease: Amniotic Band Syndrome

Brief Description: Amniotic band syndrome is a condition potentially associated with a variety of different birth defects. It is important to note that no two cases of amniotic band syndrome are exactly alike and that the associated symptoms are highly variable. The severity of amniotic band syndrome can range from a single, isolated finding to multiple, disfiguring complications. The arms and legs are most often affected. The head and face and, in some cases, various internal organs can also be affected. Amniotic band syndrome is estimated to occur in anywhere from 1 in 1,200 to 15,000 live births. No gender or ethnic predispositions have been identified with amniotic band syndrome. The symptoms vary greatly from one infant to another. Some infants develop only mild complications; others develop severe and even life-threatening complications. Most infants with amniotic band syndrome have some form of deformity of the arms and legs or fingers and toes. One or more limbs may be affected. Upper limbs are affected more often than lower limbs. In some cases, one limb or one hand or foot may be the only symptom of the disorder.

Rare Connection: University of Central Florida (UCF) linebacker Shaquem Griffin recently won the 2018 Uplifting Athletes Rare Disease Champion award. A Florida native, Griffin was born with amniotic band syndrome. As a youngster, Griffin tried to “play through” the pain. But, the pain became unbearable and the decision was made to remove his left hand when he was four years old. In every phase of life, Griffin refused to let his rare disorder slow him down or hold him back — especially on the football field as a UCF Knight. The star linebacker was named the 2016 American Athletic Conference Defensive Player of the Year in his first full season as starter. This season, he was a big-time impact player for the UCF defense and he helped guide the Knights to a conference championship and, most impressively, a perfect 13-0 season with a victory over Auburn in a coveted New Year’s Six bowl. Griffin’s dream of joining his twin brother, Shaquill, in the NFL is close to becoming a reality. Shaquem had an outstanding week at the Senior Bowl and within the last week received an invitation to the 2018 NFL Combine.

WATCH: The Pain Shaquem Griffin Can Never Forget, College GameDay ESPN

Patient Groups: Birth Defect Research For Children, Fetal Hope Foundation, The Fetal Medicine Foundation, Genetic and Rare Disease Information Center.

Getting Social: Twitter: @ORDR, @BirthDefectRch, @FetalHealthFndn Facebook: ORDR, BDRCFL, FetalHealth.

Learn More: The treatment of infants and children with amniotic band syndrome is symptomatic and supportive. For more information, go here. Some of the most well respected resources inside the rare disease community include National Institute of Health (NIH) and National Organization for Rare Diseases (NORD). A strong patient community to help makes a difference exists through Global Genes.

 

GRIFFIN RDC WINNER GRAPHIC 18

 

Losing his sight to retinoblastoma never stopped Rare Disease Champion Jake Olson from playing football for USC Trojans


RARE DISEASE SPOTLIGHT GRAPHICThere are more than 7,000 rare diseases but we are one rare disease community. Regularly, Uplifting Athletes will put one rare disease center stage to give that disease and its community a chance to shine.

Rare Disease: Retinoblastoma

Brief Description: Retinoblastoma is an extremely rare malignant tumor that develops in the nerve-rich layers that line the back of the eyes (retina). The retina is a thin layer of nerve cells that senses light and converts it into nerve signals, which are then relayed to the brain through the optic nerve. Retinoblastoma is most commonly diagnosed in children under the age of three. Though most children survive this cancer, they may lose their vision in the affected eye or eyes or need to have the eye or eyes removed. The treatment of retinoblastoma is directed first toward preserving life and then preserving vision in the affected eye or eyes. Treatment is highly personalized, which means one affected individual may receive significantly different treatment than another individual.

Rare Connection: USC long snapper Jake Olson was the 2016 Uplifting Athletes Rare Disease Champion. Olson was born with retinoblastoma, a cancer of the eyes. He lost his left eye when he was 10 months old and despite numerous procedures on his right eye, he lost his sight completely to this rare disease in 2009 when he was 12 years old. A huge Trojans fan all his life, Olson tried to watch as much USC football as possible before losing his sight in 2009. When former USC coach Pete Carroll learned of Olson’s story he invited him to practices. Carroll took it a step further when he made Jake an honorary member of the team. The loss of his sight never slowed Olson down as he continued to flourish on so many levels. During his final two years of high school, Olson was the varsity long snapper for the football team at Orange Lutheran and also played on the varsity golf team. And in 2015 he earned a roster spot on the team he grew up loving, the USC Trojans. This past season, Olson made his first appearance in a game for USC when he snapped for an extra point against Western Michigan. In addition to being a student-athlete at USC, Olson is a published author and dynamic public speaker.

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Patient Groups: American Childhood Cancer Association, Childhood Eye Cancer Trust, American Cancer Society, Rare Cancer Alliance, World Eye Cancer Hope,

Getting Social: Twitter: @wechope, @accorg, @AmericanCancer Facebook: americanchildhoodcancer, AmericanCancerSociety, wechope.

Learn More: There are currently four FDA approved drug for retinoblastoma, Clafen, Cyclophosphamide, Cytoxan and Neosar. For more information about clinical trials, go here. Some of the most well respected resources inside the rare disease community include National Institute of Health (NIH) and National Organization for Rare Diseases (NORD). A strong patient community to help makes a difference exists through Global Genes.

UCF linebacker Shaquem Griffin becomes 10th Uplifting Athletes Rare Disease Champion Award winner


GRIFFIN RDC WINNER GRAPHIC 18UCF linebacker Shaquem Griffin became the 10th winner of the Uplifting Athletes Rare Disease Champion Award.

Griffin earned more votes than any of the other three 2018 finalists in a public online vote that started last month and saw more than 10,000 total votes cast.

The Knights’ senior outlasted a field of finalists that included: Minnesota holder Casey O’Brien, Louisiana Tech running back Jaqwis Dancy and Syracuse quarterback Zack Mahoney.

“Congratulations to Shaquem on becoming this season’s Rare Disease Champion. His uplifting story embodies the spirit of all the finalists and nominees,” Uplifting Athletes Executive Director Scott Shirley said. “All of our champions have had a unique way of leveraging their personal experiences to make a positive impact on the rare disease community and I’m proud of Shaquem leading by example.”

The Rare Disease Champion Award is presented annually by Uplifting Athletes to a leader in the world of college football who has realized his or her potential to make a positive and lasting impact on the rare disease community.

Griffin will be presented the 2018 Rare Disease Champion trophy at the Maxwell Football Club Awards Gala on March 9th at The Tropicana Casino and Resort in Atlantic City.

A Florida native, Griffin was born with the rare disorder amniotic band syndrome. As a youngster, Griffin tried to “play through” the pain. But, the pain became unbearable and the decision was made to remove his left hand when he was four years old.

In every phase of life, Griffin refused to let his rare disease to slow him down or hold him back — especially on the football field as a Knight. The star linebacker was named the 2016 American Athletic Conference Defensive Player of the Year. This season he was nominated for the Allstate Good Works Team that honors football student-athletes for their community service, as well as, the Butkus, Nagurski and Bednarik awards for his play on the field for the undefeated Knights.

Griffin works with Limbitless Solutions at UCF to help children who have a need for prosthetic limbs. He also speaks to children with disabilities of all types as often as possible, and he performs a great deal of community service work not tied to his particular rare disease.

 

2018 Rare Disease Champion Finalist: Zack Mahoney, Syracuse


Each of the finalists for the 2018 Uplifting Athletes Rare Disease Champion Award will be featured here. In order to cast your online vote to help determine the 2018 Rare Disease Champion, you can visit our voting page. The winner will be announced Tuesday, January 9th.

Syracuse University VS LSU

ZACK MAHONEY

University: Syracuse University

Vitals: 6-2, 215-pound senior quarterback

Quick Hits: A former walk-on who played a year of junior college football before enrolling at Syracuse in January 2016. Earned a full scholarship prior to the 2016 season and has been a solid back-up for three seasons. … Appeared in 25 games over three seasons with 10 starts. Threw for nearly 2,000 yards and 18 touchdowns. … President of the Syracuse Chapter of Uplifting Athletes and a member of the Syracuse Student-Athlete Advisory Council (SAAC). … In 2016, broke Jim Brown’s school record for touchdown responsibility with seven TDs at Pittsburgh, including tying Ryan Nassib’s school single-game record with five touchdown passes. … Earned his bachelor’s degree in communications and rhetorical studies and is pursuing a graduate degree in public relations.

INSIDE THE STORY

For nearly all of his life Mahoney has made serving others in the rare disease community a part of his DNA. A journey of selfless service and friendship that started in elementary school continues to be a high priority for Mahoney.

Rare disease patient Blake Donegan and the former Syracuse quarterback became friends in the second grade and enjoyed a normal school-age friendship over the next half-dozen years.

But, Mahoney had not seen Donegan during the summer before their freshman year of high school, and when he did Donegan was in a wheelchair.

The secret of Donegan’s diagnosis 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, was out.

Donegan suffers seizures on a daily basis, 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 Mahoney.

THE RARE JOURNEY

Shortly after Mahoney arrived on campus as a walk-on, he learned about the Syracuse Chapter of Uplifting Athletes. Because of his relationship with Donegan back home, he immediately knew this was another avenue to shine a spotlight on the rare disease community.

Mahoney quickly assumed a leadership role for the Syracuse Chapter in 2016 and in 2017 became the President and was responsible for organizing all the awareness and fundraising events for the chapter. But, of course, Mahoney went above and beyond and established another deeply personal connection.

He formed a bond with Lillian Belfield and her family. The Belfield family is from nearby Mexico, NY and in 2015 Lillian was diagnosed with Anaplastic astroblastoma, a rare form of brain cancer, as a 7-year-old.

Mahoney and his teammates have become part of “Lilly’s Army” and have made this relationship between the Belfield family and the Syracuse football program personal.

They’ve attended soccer games, birthday parties, invited them to Syracuse Chapter events, visited Lillian in the hospital, sent notes and cards with uplifting messages. Some of the players even shaved their heads in support of Syracuse’s St. Baldrick’s Foundation fundraising event.

As a leader of the Syracuse Chapter of Uplifting Athletes, Mahoney has helped raise more than $30,000. He keeps the rest of his teammates engaged and active in support of their mission and provides a strong advocacy voice for the rare disease community.

WHAT THEY SAID

“When we’re having a bad day it’s nothing compared to what some people have had to go through on a daily basis. Seeing that really puts things in perspective for me. Really, they are the ones that are inspiring me.” – Zack Mahoney

“What has completely struck me is how incredibly genuine is their feelings for Lillian and their concern for Lillian. That’s not something I expected.” – Laura Belfield

“For them to take time out of their busy schedules to get up early on a Saturday morning to come cheer on Lillian at a soccer game, or to come visit her in the hospital it’s really meant the world to our family. For a moment I put myself in their shoes when I was in college, I was more concerned about my social life than kids in the hospital. It’s impressive.” – Jeremy Belfield

MAHONEY PHOTO 2

 

2018 Rare Disease Champion Finalist: Casey O’Brien, Minnesota


Each of the finalists for the 2018 Uplifting Athletes Rare Disease Champion Award will be featured here. In order to cast your online vote to help determine the 2018 Rare Disease Champion, you can visit our voting page. The winner will be announced Tuesday, January 9th.

OBRIEN PHOTO 2

 CASEY O’BRIEN

University: University of Minnesota

Vitals: 6-1, 180-pound freshman holder

Quick Hits: Was a standout quarterback as a freshman in high school before being diagnosed with the rare disease osteosarcoma. Also played hockey. Could not play football as a quarterback because of his rare disease, but found his way back to the field his junior as a holder and played his final two seasons. … Took up golf after his diagnosis and was named all conference his senior year (2017) with a scoring average of 79. … Managed his high school hockey team for three years since he couldn’t play. … Won the Minnesota Football Honors Courage Award in 2016. … Walked on the Minnesota Gophers football team as a freshman and earned a spot on the 2017 roster.

INSIDE THE STORY

When you spend 165 nights in the hospital over the course of 17 months you learn something about yourself.

Sports was all O’Brien knew. He played football, lacrosse, hockey and track heading into his freshman year of high school. But it was his abilities as a quarterback that made him a potential elite athlete. And he loved football more than any other sport.

His diagnosis of osteosarcoma after his freshman season led to a full knee replacement that appeared to put playing football out of the equation.

All those days and nights in the hospital to think, and a drive and passion to keep sports and football a part of his life going forward, served O’Brien well in the long run.

“My dad and I were sitting in the hospital room one night and we were talking about what positions I could play where I couldn’t get hit,” O’Brien said. “Punter, kicker or holder is what we came up with. I can’t kick very well, so it had to be holder.”

Despite a double bout with his rare disease – it spread to his lungs after his initial treatment protocol to his knee – O’Brien was committed to returning to the field as a holder.

While enduring ongoing chemotherapy treatment, O’Brien played for Cretin-Derham Hall High School as a holder despite being only 115 pounds and bald. His playing schedule was two weeks on and week off to mirror his treatment schedule.

A late-night plan hatched in a hospital bed played out for two seasons at Cretin-Derham Hall High School and has led to the University of Minnesota for a second run.

THE RARE JOURNEY

There was a nagging soreness in his left knee that O’Brien figured he could play through and address after the season. He was the quarterback, and he wasn’t hurt. So he played.

But the pain would not go away and his father, Dan, was concerned. A series of x-rays and tests didn’t reveal anything, so O’Brien charged forward and went into high school hockey tryouts. Only problem was he could no longer skate well because of the lingering pain in his knee.

Another round of tests, including an MRI, revealed the deeper problem. O’Brien, who remembers that Friday vividly, had the rare disease osteosarcoma. By Monday he had the first of what would be become 10 surgeries.

More than five months worth of nights in the hospital over an 18-month period, all those surgeries (including a full knee replacement), chemotherapy, radiation, setbacks, one step forward followed by two steps back.

For nearly two years O’Brien rode the rollercoaster of being diagnosed with a rare disease.

“The worst of it all, after the knee replacement surgery, I only really had a month to recover before I started chemo treatments again,” O’Brien said “I had full knee replacement and they had to break other bones to make it work and then going back through chemo again right after that … yeah that was really tough physically.”

O’Brien called it “the grind” for his life.

WHAT THEY SAID

“I remember sitting in my parents bedroom one night a week after I found out. We were told I would be lucky to walk without a limp the rest of my life and I would never be able to play sports again. That was pretty hard to take as a 13-year-old. Sports never left my mind, though. Because it was all I knew, and I knew I wanted to get back into it somehow.” – Casey O’Brien

“I don’t do anything different than anybody else on the team. Every workout that is scheduled is the same. Because, if you ask me, I am just the same as the next guy. My legs and lungs might not be the same, but when you put the pads on you are all the same.” – Casey O’Brien

OBRIEN PHOTO 1

 

 

2018 Rare Disease Champion Finalist: Jaqwis Dancy, Louisiana Tech


Each of the finalists for the 2018 Uplifting Athletes Rare Disease Champion Award will be featured here. In order to cast your online vote to help determine the 2018 Rare Disease Champion, you can visit our voting page. The winner will be announced Tuesday, January 9th.

Miss. State @ LATech FB  9Sept2017

JAQWIS DANCY

University: Louisiana Tech University

Vitals: 5-11, 195-pound redshirt sophomore running back

Quick Hits: In 2015 as a true freshman, saw action in all 13 games, returning 17 kickoffs for nearly 300 yards. He also had five tackles on special teams that year. … Redshirted his sophomore year after being diagnosed with the rare disease Stage 3 Hodgkin’s lymphoma in October of 2016. … Returned for spring practice in April 2017, and scored his first collegiate touchdown in the season opener six months after receiving his initial clean scan. … A three-sport athlete at Junction City HS in Junction City, Arkansas, Dancy was a three-star recruit coming out of college. He played football, basketball and track in high school and was a three-time state championship game MVP and rushed for more than 5,300 yards with 60 touchdowns. … This season he rushed for 262 yards and averaged a team-high 6.7 yards per carry with a pair of touchdowns.

INSIDE THE STORY

From the moment he was diagnosed with Stage 3 Hodgkin’s lymphoma in October 2016, all Dancy could think about was football. The shock of such a startling diagnosis at age of 19 old made the Arkansas native realize he was taking the blessing of being a college football student-athlete for granted. His diagnosis wasn’t dire, but it shook him enough to realize he really had no idea the commitment it would take to have an opportunity to play football again.

With the help of his coaches, Dancy was connected with former University of Pittsburgh and current Pittsburgh Steelers running back James Conner (2017 Rare Disease Champion finalist). And that one-time connection blossomed into a friendship and mentorship that served Dancy well during his treatments. Conner never stopped training during his chemotherapy sessions and he challenged Dancy to do the same. And during those rough stretches, Conner made sure he was available to lend an ear (or text message exchange) with Dancy as he had walked down the same road two years earlier.

“When I felt like I was down more than the day before or needed some advice, James was there,” Dancy said. “We had some long talks and he just continued to encourage and push me to keep at it.”

THE RARE JOURNEY

 Following a stellar high school career, Dancy made serious progress transitioning to the next level. As a freshman where he saw action as a kick returner and on the punt team. The next step was to start getting time in the rotation at running back.

But, in early October of his sophomore season he went from thinking about getting regular repetitions to wondering if he would ever play football again.

His rare disease diagnosis was a shock to the system, but he met the challenge head on and committed to working out during his chemotherapy treatment at St. Jude in Memphis.

He lost more than 20 pounds, but he was a regular in the weight room. How he felt after the treatments didn’t matter. If, not when, he cleared the hurdle of his diagnosis of Stage 3 Hodgkin’s lymphoma, he was committed to playing college football again.

That work ethic paid huge dividends when after a treatment in early February this year he was asked to wait in the post treatment room by the nurses. He had no idea why and Dancy admits his mind was spinning. Excitedly the nurses opened the doors with balloons, candy and confetti to celebrate his clean diagnosis.

WHAT THEY SAID

“I missed so much about football, not just the game but everything. This has definitely given me a different outlook on everything for sure. I know now that every practice or game could be my last one. Learning to be patient and have patience was very valuable to me. I continued to work hard and fight this with everything I had, but it was a process. All I could do was keep a positive mind-set. In the end, something like this reveals character.” – Jaqwis Dancy

“With a 19-year old young man that is fighting, your attitude is critically important. I think one of the keys to fighting cancer is a positive outlook and a positive frame of mind. We put a sticker on our helmet that had the number 20 and said the word ‘compete.’ That is what Jaqwis did. I am really proud of the positive attitude he took.” – Louisiana Tech head coach Skip Holtz

Bulldog Football vs Northwestern State

 

Four finalists announced to determine the 10th winner of the Uplifting Athletes Rare Disease Champion Award


RDC GRAPHIC 18Uplifting Athletes is pleased to announce that four finalists have been chosen for the 2018 Rare Disease Champion Award.

The Uplifting Athletes Rare Disease Champion Award is given to a leader in college football who has realized his or her potential to make a positive and lasting impact on the rare disease community.

The 10th Uplifting Athletes Rare Disease Champion will be one of these four individuals: Jaqwis Dancy of Louisiana Tech, Shaquem Griffin from University of Central Florida (UCF), Zack Mahoney from Syracuse and Casey O’Brien from Minnesota.

Uplifting Athletes is now a member of the National College Football Awards Association (NCFAA). So, for the first time in the 10-year history of the Rare Disease Champion Award, the finalists were unveiled on the red carpet prior to the Home Depot College Football Awards Show in Atlanta on Thursday, December 7.

A public online vote is used to determine the winner of the Rare Disease Champion Award. You can vote once per day for your favorite finalist at www.upliftingathletes.org/rare-disease-champion and voting will be open until Monday, January 8th at midnight.

The finalist with the most votes will be winner. The 2018 champion will be officially announced on Tuesday, January 9th.

The 2018 Rare Disease Champion will be honored as part of the Maxwell Football Club Awards Gala on March 9th in Atlantic City, New Jersey at the Tropicana Casino & Resort.