2015 Leadership Retreats: Two Weekends of Student-Athlete Leadership Training


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Chapter leaders from 10 schools took part in our Chicago, IL leadership retreat

One of the key components for the college football student-athletes who choose to be members of the Uplifting Athletes Chapter leadership team is hands-on training.

Over the past five years, the Uplifting Athletes staff hosted as many of these student-athletes as possible in Harrisburg, Pennsylvania for the annual Leadership Retreat. The value of this in-person education and training with the Uplifting Athletes staff has proven to be an invaluable commodity for all parties involved.

With 25 Chapters nationwide, choosing a single weekend to train and educate the chapter leaders was becoming a difficult proposition. In order to expose as many of the student-athletes to our Leadership Retreat as possible, Uplifting Athletes held two leadership events during the month of May.

The first retreat took place in Harrisburg with chapter leaders from four schools in attendance. On the final weekend in May, 16 chapter leaders from 10 university campuses traveled to suburban Chicago for three days of Uplifting Athletes Chapter leadership training.

“The retreat greatly improved my knowledge on what it takes to run a successful chapter. I was able to make some new connections and learn how to properly start, run, and market a Lift for Life event,” NC State Chapter leader and tight end Cole Cook said. “I feel I have the ability and confidence to now improve the NC State chapter and spread our message to more people. Before I came, I was unsure of what all I would be responsible for.”

Over the two weekend retreats, sessions and workshops held included a brief history of Uplifting Athletes, leadership and project management, event planning, marketing, engaging your teammates and how to communicate and tell your rare disease story.

Former Northwestern Chapter leader Jacob Schmidt, who is now the Director of Player Development at Northwestern, had a unique perspective on his Uplifting Athletes experience in relation to his current position in helping enhance the student-athlete experience.


The classroom instruction is only a small part of what makes the leadership retreat such a valuable learning tool. College football players who step forward and assume leadership positions in their respective chapters find out they have some common bonds beyond football.

Now, don’t be mistaken. There’s plenty of football conversation in the room when you get nearly 20 current college football student-athletes in the same room. But through the process of learning they are all like minded individuals all trying to accomplish the same goal, there is some inherent friendships and bonds formed that prove invaluable on many levels.

“The leadership retreat was both fun and informative. I did not know much about running a chapter coming into the retreat but I feel that I can now effectively lead our chapter after the retreat,” Maryland redshirt sophomore offensive lineman Joe Marchese said. “I think the biggest takeaway for me was the chance to talk to other leaders and learn how they run their chapters.”

This was the first year Uplifting Athletes ran two leadership retreats. The addition of a retreat in the Midwest opened up doors that otherwise might have been closed and combined the pair of weekends equipped 23 current college football student-athletes from 13 different schools to charge forward and become better chapter leaders.

“I think the two leadership retreats has become necessary because as we’ve grown our network its impossible to coordinate the athletic and academic schedules for that many schools,” Uplifting Athletes Executive Director Scott Shirley said. “With two options, it gives more of the student-athletes chapter leaders the option to grow and learn through the training and experience they get from attending.”

Uplifting Athletes Letterman’s Club launched; Rare Disease Champion honored at Maxwell Awards Gala


RDC MAXWELLUplifting Athletes had the pleasure of participating in the 78th Maxwell Football Club Awards Gala this past weekend at The Tropicana Resort in Atlantic City, NJ.

This was the third consecutive year we recognized the Uplifting Athletes Rare Disease Champion as part of the Maxwell Awards Gala.

In addition to honoring Auburn wide receiver Sammie Coates and his friend McKenzie Ray as the 2015 Rare Disease Champion, Uplifting Athletes also officially launched its Letterman’s Club sponsored by Select Medical Saturday with a three-hour meeting and work session.

UPLIFTING ATHLETES LETTERMAN’S CLUB

The Letterman’s Club has always been part of the vision Uplifting Athletes founder and executive director Scott Shirley had for the organization.

And thanks to the support of Select Medical, the Letterman’s Club is now an official extension of the mission and vision for Uplifting Athletes.

These like-minded and selfless servants who helped lead or start up a Chapter on their respective campus, are committed to continuing to support the rare disease community.

Former college football players from Maryland, Nebraska, Penn State, Princeton and St. Francis joined the Uplifting Athletes team in Atlantic City for the two-day awards gala.

The highlight Thursday night was the Maxwell VIP Reception sponsored by the Uplifting Athletes Letterman’s Club. The attendees enjoyed getting a picture taken in front of the huge step-and-repeat banner prior to dinner.

After Maxwell President and former Philadelphia Eagles quarterback Ron Jaworski welcomed the VIP guests, Shirley and Ray Pennacchia from Select Medical each had a chance to address the audience.

Friday morning the lettermen, Uplifting Athletes staff and Select Medical representatives Amy Ridall and Pennacchia gathered in the Bongo Conference Room at Tropicana for the first Letterman’s Club meeting.

Following introductions, vision casting and lunch, the core members in the room, along with a few lettermen online as part of a Google Hangout, went to work on approving a constitution, planning a 2015 event and electing the first officers.

Obi Egekeze from Maryland was approved as the first president. Chris Borland of Wisconsin and the San Francisco 49ers was voted in as the vice president. And the St. Francis duo of Jake Smith and Jeff Wasilewski were approved as the secretary and treasurer, respectively.

The first Uplifting Athletes Letterman’s Club meeting was adjourned at 2 p.m. sharp in order to allow everybody enough time to get ready for the Maxwell Awards Gala that evening.

2015 RARE DISEASE CHAMPION TROPHY

Being able to honor our Rare Disease Champion as part of the Maxwell Awards Gala, where football is a big priority, has allowed Uplifting Athletes to shine a spotlight on the rare disease community.

This year the story was so personal. The relationship between Coates and Kenzie Ray is way more than just a football player and a little girl fighting for her life with a rare form of leukemia.

Coates and Ray are like a brother and sister and their kinship is only fully revealed when you get to witness them interact first-hand.

So Uplifting Athletes was proud to host Coates, his girlfriend Kailey Rogers and Kenzie’s mom and dad, Keisha and Tommy Ray, at the 2015 Maxwell Awards.

They group flew in from Alabama together and was transported from the Philadelphia airport to Maxwell via a private limo provided by the Maxwell Football Club.

It was the start of a memorable weekend that included the VIP Reception Thursday night and culminated in the presentation of the Rare Disease Champion trophy to Coates with his friend Kenzie right by his side.

Dr. David Fagjenbaum, a rare disease survivor who works at the University of Pennsylvania doing rare disease research, gave the nearly 1,000 Maxwell dinner guests a first-hand account of his fight and introduced Uplifting Athletes.

Following a nearly 5-minute video that gave the audience further insight into the story of Sammie and Kenzie, the duo received a nearly 2-minute standing ovation.

Tommy Ray made it very clear to Uplifting Athletes that his daughter would not have had the will to continue fighting if it wasn’t for her relationship with Sammie.

We are proud to share that Kenzie is doing much better and the Ray family used the experience at Maxwell to reflect on how far they had come in 12 months.

It was a busy two days with plenty of moving parts, but to launch the Letterman’s Club and honor such a deserving Rare Disease Champion the 2015 Maxwell Awards Gala will always be a memorable milestone weekend.

Together … We Are … Stronger!

Inside Perspective on the 2015 Rare Disease Champion Award


Andy Shay is the Director of External Relations at Uplifting Athletes. After spending 21 years as a sportswriter covering high school and college football in Central PA, Andy joined Uplifting Athletes full-time in April 2014.

Through his position producing all content, overseeing all public relations and working to create a greater role in national rare disease advocacy and awareness, Andy runs the annual Rare Disease Champion Award.

This award, which is given to a leader in college football that has realized his or her potential to make a difference in the rare disease community, embodies the spirit of what our national organization is trying to accomplish.

At the close of this year’s campaign, we asked Andy share an insider’s perspective about what stood out to him about each finalist and how proud we are of each and every finalist for their impact in the rare disease community.

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Running the Rare Disease Champion campaign is one of the highlights of my year working for Uplifting Athletes.

Congratulations to Auburn’s Sammie Coates for becoming the seventh winner of the Rare Disease Champion trophy. It will be an honor to recognize him during the Maxwell Awards Gala next month in Atlantic City.

One winner is chosen, but from my chair the highlight of this campaign has always been learning about new rare disease stories of adversity, triumph and inspiration inside of college football.

This year we had six finalists, and each would have been a worthy winner. That’s the real beauty to me – it doesn’t matter who wins because the stories cut so deep by the time voting starts I’ve already been changed.

In sound bite form, here’s what I learned and thought about each of the 2015 Rare Disease Champion finalists and how their stories left an impact on me.

Auburn’s Sammie Coates is genuine. That video ESPN did for College Gameday on his relationship with Kenzie Ray makes me lift my glasses and wipe every time. You would think Sammie is the one having the most impact in this relationship. But I get the feeling it’s the other way around and Kenzie’s personality and fight fuels Coates.

Quinterrius Eatmon from University of South Florida stayed the course through very troubled waters and continued to thrive in the classroom and on the football field despite ridiculous distractions and adversity. As a father and husband he showed the world exactly what kind of man he is.

Friendship matters to Baylor wide receiver Levi Norwood. His relationship with Jacoby Burks was more than most would do. But when challenged to take an action in his final year of eligibility, Norwood valued that friendship enough to take on a lot more work and started a Chapter of Uplifting Athletes at Baylor.

Minnesota’s Dan O’Brien did what every parent would have done when he found out his son was diagnosed with a rare disease. He left everything in the rear view mirror. But O’Brien was strong enough to burn the candle on both ends, continuing to work and being there for his son each and every night during a 100-plus day hospital stay. Only the strongest survive.

UCLA defensive back Marcus Rios’ story is frightening. Doctors can’t figure out what is ailing him, he’s told he could possibly die after they correctly diagnosis him. Then he loses nearly 50 pounds, yet still find the strength to fight back. And he comes back from all that to play the next year? His love of the game humbles me.

Greg Stevens was the underdog. The Eastern Illinois offensive coordinator was the only finalist from an FCS school. He’s very quite and reserved, too. Bottom line is he’s a rare disease survivor who, judging by his runner-up finish, inspired a lot more people than he knows. He can coach my kid in any sport!

This was my second year running this campaign for Uplifting Athletes. Watching the awareness for the rare disease community spike with nearly 38,000 votes through our public online voting process was humbling.

It showed me people care. And the inspirational and moving story will always serve a purpose.

Thanks to each and every person who voted and to all six finalists for sharing their stories.

This campaign is all about bringing another level of awareness to rare diseases and in turn supports our mission to align college football with rare diseases and raise them as a national priority.

Six inspirational stories individually each provide a snapshot, but collectively they tell a much bigger story built on adversity, perseverance and strength.

Together … We Are … Stronger!

News and notes on all six Rare Disease Champion finalists


We have hit the halfway mark of the 2015 Uplifting Athletes Rare Disease Champion online voting campaign that launched January 12th and continues until January 31st. Each of the six finalists has a rare disease story that we’ve already shared.

But not every bit of information or quote makes the final version of each story. So here’s one more tidbit on each of the 2015 Rare Disease Champion finalists.

SAMMIE AND KENZIESAMMIE COATES, AUBURN

The first time Coates and Kenzie Ray had a chance meeting in the fall of 2013, Ray gave Coates a bracelet that said “Pray For Kenzie”. She asked the Tigers’ wide receiver if he would wear it. Coates said he would, put the bracelet on his wrist and nearly 18 months later still uses the reminder on his wrist as motivation. That first meeting opened the door for a unique connection that feels more like family than just friends.

Watch this ESPN Gameday video about Sammie Coates and Kenzie Ray

61425 USF EATMON CUQUINTERRIUS EATMON, SOUTH FLORIDA

Eatmon daughter, 2-year-old Melaynna Savannah, is battling a rare disease and his wife, Melyza, was told in her second trimester of pregnancy that there was a problem with the baby’s brain development. But fighting through adversity was nothing new for Eatmon. He blacked out at school midway through his senior season in high school and was required to have a cardiac ablation to correct a heart-rhythm problem. As his playing time on the field diminished because of the surgery, the scholarship offers faded. But in the recovery room after surgery his mother took a call from a USF assistant coach who informed him USF was still interested and a full scholarship was his if would come to Tampa.

NORWOOD 3LEVI NORWOOD, BAYLOR

As the Baylor Chapter President, Norwood navigated all the obstacles a first-year Uplifting Athletes Chapter can encounter and spearheaded two fundraising events in 2014 for cerebral palsy research. The Baylor Chapter’s Lift For Life and Touchdown Pledge Drive combined to raise more than $9,000.

DAN AND CASEY O'BRIENDAN O’BRIEN, MINNESOTA

O’Brien and his wife, Chris, had enough on their plate already with three children and a busy schedule. But when Casey was diagnosed and told the first step was full knee replacement surgery and chemotherapy treatment for the tumor, a long hospital stay was on the horizon. But the O’Brien’s made sure it was a team effort. For nearly 100 days Chris took the day shift with Casey and Dan was the night watchman.

Watch this video on the O’Brien family story from KARE11 TV

MARCUS RIOS 3MARCUS RIOS, UCLA

Rios’ condition is so rare, and took several incorrect diagnoses before doctors finally figured out what was wrong, Rios is going to be featured on an upcoming episode of “Monsters Inside Me.” The television show on Animal Planet features people who are victims of parasites that live on or in another species, which serves as hosts from which the parasite gains nutrients. Rios’ episode was filmed last summer as he prepared to return to playing football.

STEVENS PHOTO 1GREG STEVENS, EASTERN ILLINOIS

Part of the treatment for Stevens’ rare disease is a bone marrow transplant. After four months of chemotherapy and continuing to coach all season, Stevens admitted his energy level was greatly impacted by the long haul. But he needed the procedure to complete the treatment protocol, so shortly after the season underwent a successful bone marrow transplant and is now back home recovering.

2015 Rare Disease Champion Finalist: Greg Stevens, Eastern Illinois University


Each of the six finalists for the Uplifting Athletes Rare Disease Champion Award will be featured here. In order to cast your online vote to help determine the 2015 Rare Disease Champion, you can visit our voting page. The winner will be announced February 1.

Jason Howell | The Daily Eastern News

(Photo: Jason Howell, Daily Eastern News)

GREG STEVENS

University: Eastern Illinois University

Vitals: Offensive Coordinator

Quick Hits: A 1992 graduate of Eastern Oregon, Stevens played quarterback in college at Snow Junior College in Utah before finishing up at Eastern Oregon. … First coaching job was right out of college at Mesa State. … This was his first season at Eastern Illinois. … Served as the offensive coordinator at Southeastern Louisiana where in 2013 the Lions had one of the top 10 total and scoring offenses in the FCS and reached the quarterfinal round of the FCS playoffs.

A long-time coaching kinship that blossomed into a friendship was re-united just months before Greg Stevens found out he had a rare disease. One of his closest friends in the coaching fraternity, EIU head coach Kim Dameron, was there to help his friend, and offensive coordinator, endure through six months of treatment together. His diligence inspired the team and the rest of the coaching staff.

INSIDE THE STORY

Stevens and Dameron met more than a decade ago when each was a coordinator at Stephen F. Austin.

Dameron had already been on staff for one season as the defensive coordinator when Stevens was brought on to coordinate the offense in 2001.

Stevens’ wife Amy and Dameron’s wife Debbie also became friends and one of Dameron’s daughters babysat the Stevens’ kids.

The next four years a friendship was created on the field working together and off-the-field as the two families spent time together. Each went their separate ways in 2005, but when Dameron was hired as the head coach at EIU, he made call to Stevens looking to see if his old friend wanted to be his offensive coordinator.

Even though he was comfortable running the offense at SLA, the call of an old friend was enough to get him to leave the south and head to Charleston, Ill.

THE RARE JOURNEY

Only months after taking over as the offensive coordinator at a new school, Stevens was diagnosed with non-Hodgkin’s large B-cell lymphoma in June.

Cancer is always a scary word to hear and any form of chemotherapy will take a physical and mental toll, but you can still perform a job on a limited basis in most cases.

Stevens had an offense to run for a new team. And even though his friend was the head coach, he still wanted to do his job to the best of his ability.

Chemotherapy started right away and lasted until early October. But Stevens made sure he didn’t miss a single practice or Eastern Illinois game while undergoing treatment.

After the season, he underwent a bone marrow transplant, because despite good scans recently a patient with Stevens’ rare disease has an 85 percent reoccurrence rate if they don’t undergo a bone marrow transplant.

WHAT THEY SAID

“It was a blessing. Kim was so good about everything. Luckily, I was able to do all my chemo treatments and still work.” – Greg Stevens

“It’s kind of like brothers, you don’t have to talk all the time to keep that commonality, that bond. I’ve defended a lot of people, and because of that I knew his offense was the kind of offense I wanted to run. It just so happens that one of my best friends knows how to do it.” – Eastern Illinois head coach Kim Dameron

“Of course when you first hear that you have something like this, it’s tough. But I was more concerned about my family and what it would be like on them. I wasn’t as worried about me. The chemo treatments were tough during the season, especially the week after. I had to change the way I coached a little more, because physically I wasn’t able to do some things I was used to doing without thinking in the past.” – Greg Stevens

Cast your vote for the 2015 Rare Disease Champion!

2015 Rare Disease Champion Finalist: Levi Norwood, Baylor


Each of the six finalists for the Uplifting Athletes Rare Disease Champion Award will be featured here. In order to cast your online vote to help determine the 2015 Rare Disease Champion, you can visit our voting page. The winner will be announced February 1.

Levi Norwood , Sean MaagLEVI NORWOOD

University: Baylor University

Vitals: 6-2, 200-pound senior wide receiver

Quick Hits: Started his high school football career in State College, Pa. in the shadow of Penn State where his father, Brian, was an assistant coach. But transferred to Midway HS in Waco after his dad joined the Baylor staff. … All-Big 12 honoree as a receiver and kick returner who finished his career with more than 1,600 yards receiving and 11 touchdowns. … Graduated in May 2014 with a degree in public relations and did an internship with the Baylor Athletic Communications office.

For Levi Norwood, the decision was easy. When he met a student at his former high school in a wheelchair battling cerebral palsy, the Baylor wide receiver made sure the meeting wasn’t a one-trick pony. Already a busy student-athlete, taking time to form a genuine relationship with Jacoby Burks and his family eventually gave Norwood reason to join a bigger movement.

INSIDE THE STORY

Back for a visit at his high school alma mater, Midway in Waco, Norwood was at a football game the first time he met Burks and his family.

Once would have been enough. But Norwood figured why not welcome a friend from his high school into his current family at Baylor. So for three years, whenever it worked for all parties involved, Norwood and his teammates welcomed the Burks family to Bears’ practices and games.

It was a former friend from his days in State College that helped Norwood take this relationship to the next level.

Sam Rodgers at Syracuse had co-founded the Syracuse Chapter, and told Norwood he should do the same at Baylor because the team already had a rare disease cause.

THE RARE JOURNEY

Jacoby Burks and his family have dealt with cerebral palsy since birth. This rare disease limits movement and is permanent. There are certainly more complications, but Burks is restricted to a wheelchair.

There is no cure for cerebral palsy, so research dollars in the quest to find a cure are vital. And that’s what Norwood and his relationship with Burks is doing at Baylor.

The Bears held their inaugural Lift For Life and in-season Touchdown Pledge Drive in 2014, and all the proceeds from those events went to cerebral palsy research.

What matters more is Jacoby and his parents were able to attend each event – the Lift For Life in the summer and TD Pledge Drive against Kansas – in person to be part of the celebration.

Levi Norwood, Isaiah NewsomeWHAT THEY SAID

“As the year have passed, Levi made sure Jacoby came to the games and practices on the field. Jacoby loves Levi. Every time I tell him we’re going to see him and the rest of the team, he gets so excited. It’s amazing to see that. It gives me chills knowing Levi and the Bears care so much about kids who suffer from cerebral palsy.” – Jacoby Burke’s mom Latricia

“It’s a blessing knowing that Jacoby and his family are supporting us and going to our games, and in return, we want to do the same for them. We definitely play a lot harder knowing that. We’re blessed to have this platform. It would be wrong not to give back.” – Levi Norwood

Vote for the 2015 Rare Disease Champion!

2015 Rare Disease Champion Finalist: Sammie Coates, Auburn


Each of the six finalists for the Uplifting Athletes Rare Disease Champion Award will be featured here. In order to cast your online vote to help determine the 2015 Rare Disease Champion, you can visit our voting page. The winner will be announced February 1.

Missouri Auburn SEC ChampionshipSAMMIE COATES

University: Auburn University

Vitals: 6-2, 201-pound junior wide receiver

Quick Hits: Each of the last two seasons Coates has emerged as one of the top deep threats in the country by averaging more than 21 yards per catch. … One of the top 25 wide receivers in the country coming out of high school, sat out his first year at Auburn with an injury and only saw limited duty his second year. … Lost his father at age 11 to an industrial accident. … Recently declared himself eligible for the 2015 NFL Draft. … Nominated for the 2014 Allstate AFCA Good Works Team.

When Auburn wide receiver Sammie Coates saw 12-year-old Kenzie Ray sitting by herself after a game in 2013 as he left the stadium lockerroom, he didn’t know her story. But he knew that look in her eyes and the big-time talent in the midst of his breakout season didn’t hesitate to walk up and strike up a conversation. Out of that conversation he learned she was battling a horrible rare form of leukemia. She was much stronger than he imagined. And a wristband she gave him was the first step in what would blossom into a genuine kinship.

INSIDE THE STORY

Growing up in Leroy, Alabama Coates was not naturally drawn to sports. He was introduced to athletics by his father – first baseball and then later football.

But when his father was killed in an industrial accident at age 11, Coates’ journey became more difficult. But despite his own pain and suffering, he’s developed a personality that sees pain and suffering in others first.

And that night during the 2013 season, after a dramatic home victory over Mississippi State, he saw that look in a little girl from Tallassee, Alabama who has been an Auburn fan all her life.

Kenzie Ray was on the field night because, a cancer patient and rabid Tigers fans, she was invited to that game by the Auburn dance team.

The outcome of that night was the first step in what has blossomed into a two-way friendship where both parties, Sammie and Kenzie, share a unique bond that makes each a better and stronger person.

RARE JOURNEY

Diagnosed at age 11 with a rare disease that required a bone marrow transplant, nearly a month on a ventilator and a year of chemotherapy, the Ray family has been through more than most.

But her parents, Keisha and Tommy, use their daughter as inspiration. Kenzie gets part of her hope and inspiration to fight from Coates.

June of 2014 was a dark time for Kenzie and the Ray family. She was battling pneumonia and already was weakened by a recent round of chemotherapy so her immune system wasn’t working.

Doctors told the family she might not make it through the night. So Keisha called Sammie to give him the update. Three hours later he was at the hospital holding Kenzie’s hand and praying – assuring the family he believed she was going to make it.

Auburn Ole Miss FootballWHAT THEY SAID

“It makes me strong to see somebody like her, who has to fight for her life, when we take everything for granted. I really love her like a sister. I know I have to keep fighting for her because she’s fighting every day. I love to talk to people and make them smile, but when I saw her it was something different.” – Sammie Coates

“When I watch Sammie, it just makes me forget everything about what I’m going through, and the nauseousness. It makes me feel proud of him to go out there and wear my bracelet and try to win for his team. I think of him as my best friend … my hero.” – Kenzie Ray

“I honestly feel like God placed them in each others lives. There’s more of a connection there than just the little girl with cancer and the football player. It’s deeper, way deeper than that.” – Kenzie’s mother, Keisha Ray

Cast your vote now for the 2015 Rare Disease Champion!