Annual Leadership Development Conference welcomes 36 college football student-athletes to Atlanta


LDC18 GRAPHICFor the ninth consecutive year, we will gather college football student-athletes for three days of education, training and networking during the 2018 Uplifting Athletes Leadership Development Conference.

This year 36 current football players from 18 universities across the country will travel to Atlanta on Friday, January 26 to kick off a busy weekend of engaging work sessions, networking and relationship building.

“We are excited to provide the student-athletes with an opportunity to network with other bright minded leaders in college football,” Uplifting Athletes Director of Chapter Development Brett Brackett said. “Our goal is to grow their personal skill set and help them learn more about how to leverage their position as student-athletes to impact the rare disease community through Uplifting Athletes.”

Among the 18 schools that will be represented in Atlanta, six of those are prospective Uplifting Athletes Chapters. Defending National Champion Alabama, Minnesota, Temple, Davidson, Lehigh and Western Michigan have student-athletes attending for the first time.

Current Chapter leaders from Clemson, NC State, Notre Dame, Penn State, Syracuse, Illinois, Saint Francis, Penn, Northwestern, Maryland, Princeton and Stony Brook will also be in attendance.

The 2018 Leadership Development Conference will kick off with a team meal Friday night prior to a full weekend agenda.

The conference content is developed and driven by the Uplifting Athletes staff, but will also feature a panel of former student-athletes answering questions about the transition to the professional world.

Included in the workshop sessions on Saturday and Sunday are an overview of Uplifting Athletes, Lift For Life and Touchdown Pledge Drive event planning and transferable life skills development.

The highlight of Saturday will be an Uplifting Experience for the student-athletes featuring a visit to the Scottish Rite Children’s Hospital to interact with rare disease patients.

We are very excited to bring this group together to learn from each other, to strategize together and to foster the sense of teamwork that inspires us all.

 

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.

 

Five college football programs with an Uplifting Athletes Chapter close out the season with a bowl victory


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Seven college football programs with an Uplifting Athletes Chapter were involved in one of the 41 bowl games to end the 2017 season.

Five of the seven, Florida State, NC State, Northwestern, Notre Dame and Penn State, came out with victories in their final game of the year.

NC State set a Sun Bowl record with six rushing touchdowns on in a three-touchdown victory over Arizona State. The Wolfpack offense piled up nearly 500 yards while the defense forced ASU into four turnovers. NC State finished 9-4 overall and should finish inside the Top 20.

Penn State wrapped up its second 11-win season in a row behind 342 yards passing from Fiesta Bowl MVP Trace McSorley to nudge past Washington. The Nittany Lions, who converted on 13 of 17 third-down opportunities, jumped out to a 28-7 lead before the Huskies made a late charge. PSU finished as a Top 10 team for the second year in a row.

Northwestern’s defense knocked down a 2-point conversion by Kentucky in the dying seconds to give the Wildcats a one-point victory in the Music City Bowl. The win was Northwestern’s eighth in a row and gave a Wildcats squad that was 2-3 at one point a 10-win season. RB Justin Jackson was a workhorse, carrying 32 times for 157 yards and a pair of touchdowns.

Notre Dame WR Miles Boykin made a dramatic one-handed catch and then raced 55 yards for the score with less than 90 seconds remaining to propel the Fighting Irish past LSU in the Citrus Bowl. The win gave ND a 10-win season, ended a nine-game losing streak in January postseason games and was the Fighting Irish’s first New Year’s Day win since the 1994 Cotton Bowl.

Florida State closed out a difficult 2017 that included major injuries to key players and the departure of long-time head coach Jimbo Fisher with four consecutive victories to avoid its first losing season since 1976. The Seminoles ran away from South Mississippi behind an Independence Bowl record four touchdown passes from freshman quarterback James Blackman.

Defending National Champion Clemson played Alabama in its final game of the season for the third consecutive year. And for the first time since 2015, the College Football Playoff Championship Game did not include the Tigers after they fell to the Crimson Tide in the Sugar Bowl.

With five programs with an Uplifting Athletes Chapter finishing with at least 10 wins, Clemson, Northwestern, Notre Dame, Penn State and Washington, and NC State finishing with nine victories, there could be six chapter schools ranked inside the final Top 20 rankings.

 

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: Shaquem Griffin, University of Central Florida (UCF)


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.

GRIFFIN PHOTO 3

 

SHAQUEM GRIFFIN

University: University of Central Florida

Vitals: 6-2, 230-pound senior linebacker

Quick Hits: Born with the rare disorder amniotic band syndrome of his left hand, Griffin endured the pain for four years before his hand was surgically removed in 1999. … Has an identical twin brother Shaquill who is a rookie for the Seattle Seahawks after being drafted in the third round. … Chose UCF because the school was committed to giving both Griffins the opportunity to play. … Moved from safety to linebacker in 2016 and in his first year as a starter won the American Athletic Conference (AAC) Defensive Player of the Year award. … Finished 2017 regular season third on the Knights in tackles with 62, had 10 tackles for loss and 5.5 sacks to earn First Team All-Conference. … Aspires to follow his twin brother to the NFL. … Was nominated for AFCA Good Works Team in 2017 for outstanding community service.

INSIDE THE STORY

The Griffin brothers made it perfectly clear they were a package deal coming out of high school. Shaquill was the more highly recruited and sought after prospect, but neither saw the other as better.

University of South Florida initially offered only Shaquill, who is older than Shaquem by 60 seconds, a scholarship then later offered one to his twin brother. That wasn’t good enough.

Only UCF promised equal opportunity to both Griffins to play college football. After three seasons (including a redshirt), Shaquem struggled to ascend up the depth chart beyond the scout team and special teams. Meanwhile his brother flourished as a corner for the Knights and was getting serious NFL attention.

After being told “you can’t” most of your life, Shaquem Griffin was ready when opportunity knocked in early 2016. UCF went through a coaching change and new skipper Scott Frost’s staff saw Griffin as an outside linebacker instead of a safety in the 3-4 defense they were employing.

The combination of speed, power and athleticism completely overshadowed the absence of a left hand. In his first season as a full-time starter Griffin soared well beyond expectations and became an impact player.

“I wasn’t ready. It was God’s plan and purpose for me. I had to gain weight to play in college so I did that. Then I had to really learn my craft,” Griffin said. “I was always faster than offensive lineman so I could run past them. I couldn’t do that anymore. So I learned from not only my position coach, but the D-line coach and the O-line coach to understand what it took. Not having a left hand made me become better, but I had to learn it.”

THE RARE JOURNEY

When identical twins Shaquem and Shaquill Griffin were in their mother Tangie’s womb, a fibrous tissue wrapped around Shaquem’s left wrist and prevented his hand from developing. When he was born, his fingers were only small nubs.

His underdeveloped left hand was extremely painful and sensitive. This rare disease became so painful that one night when Shaquem was four years old his mother found him with a knife in the kitchen wanting to cut his fingers off to end the pain.

That’s when Tangie knew her youngest son needed surgery right away to end his suffering. It was clear no left hand was better than enduring the pain of having a left hand was causing.

WHAT THEY SAID

“I never went into a practice or a game thinking about me having one hand. I never thought about how hard it must be to play that way. I just see the ball and go after it and make plays like anybody else. Yes I might look a little different, but I’ve played a game with a broken right hand and made 14 tackles so I can play with no hands if I have to. My big thing is to prove somebody wrong when they say I can’t do something because I only have one hand. I use it as motivation, go out and play as hard as I can to show others you can do anything you want.” – Shaquem Griffin

“I’m sure he’s had plenty of people in his life tell him football is not the right avenue to pursue. But if you want it bad enough, you can make it happen. And Shaquem’s done that. He doesn’t want to be seen as someone who has a disability. He just wants to go out and play football like everyone else.” – Former UCF head coach Scott Frost

 

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