Chapter Update: Georgia Tech rallies past Florida State and two other teams post Week 1 victories


Georgia Tech overcame a tough first half that included two interceptions and a pair of blocked field goals to rally from 10 points down to win its season opener on the road against fellow Uplifting Athletes Chapter Florida State.

True freshman quarterback Jeff Sims accounted for 341 total yards in his first start and Jude Kelly drilled a 32-yard field goal midway through the fourth quarter to win it for the Yellow Jackets.

Georgia Tech’s defense surrendered a touchdown on the opening drive of the game before slamming the door by limiting the Seminoles offense to only two field goals the rest of the way.

Clemson: A school record 18th career 100-yard rushing game by running back Travis Etienne along with a stellar outing by quarterback Trevor Lawrence, who threw for 351 yards and scored a pair of rushing touchdowns, powered the No. 1 ranked Tigers to a road victory at Wake Forest. Clemson Chapter leader Will Spiers averaged 42.8 yards on four punts including a 56-yard bomb. The Tigers’ defense registered six sacks and 11 tackles for a loss.

Notre Dame: Sophomore running back Kyren Williams, making his first career start, torched visiting Duke for 205 total yards and a pair of touchdowns as Notre Dame recorded its first ever conference victory. Williams became the first Irish player in the last 25 years to record 90-plus yards rushing and receiving in the same game. Notre Dame Chapter leader and starting linebacker Drew White recorded five tackles.

Syracuse: Led by three interceptions, two by linebacker Mikel Jones, the Orange defense kept Syracuse in the game for three quarters on the road against No. 18 North Carolina. The Orange trailed 10-6 entering the final 15 minutes before the Tar Heels rattled off touchdowns on three consecutive possessions to finish off the determined Orange. Former Syracuse Chapter leader Nolan Cooney drilled four of his nine punts more than 50 yards and averaged a stellar 47.8 yards per kick.

Each week during the college football season we will feature a player who is an officer for an Uplifting Athletes Chapter. This week we present Colgate quarterback and Chapter President Jake Froschauer

A rare journey inside a COVID-19 world


Spend more than five minutes with Marni Cartelli and there is no possible way to miss her passion. She proudly wears it on her sleeve.

What drives her passion is a will and commitment to battle a difficult and complex rare disease that makes a day without pain nearly impossible.

Marni was diagnosed with Complex Regional Pain Syndrome (CRPS) (formerly called Reflex Sympathetic Dystrophy) in 2016. CRPS is a disorder in which pain, occurring spontaneously or from a sensory stimulus, is disproportionately far more exaggerated than it should be. 

“Treating rare and medically complex cases like mine takes multimodal approaches. Remove one piece of the puzzle and the care patients receive results in suboptimal outcomes,” said Marni, a former medical worker who suffered a shoulder injury in 2015 that spurred her rare diagnosis less than a year later.

Marni possesses bull-like determination to endure anything and everything in order to keep pushing forward. She has a loving and supportive husband, John, and an outstanding team of doctors she trusts.

Despite all those assets in her toolkit, Marni admits the last several months have been some of the toughest and most difficult during her half-decade rare journey.

Following a physically grueling, but emotionally rewarding, two-week stretch on the road doing rare disease advocacy work, Marni knew her body was going to be wiped out. But, she also knew her critical bi-annual regimen of six weeks of infusion therapy was on deck and that would provide the physical relief she needed.

Marni and John live on Long Island. When New York went into COVID-19 lockdown the third week of March, her six-week infusion treatment schedule evaporated. Her body continued to struggle without the treatment, and there was nothing Marni or her doctors could do.

“It was a difficult decision. You had to weigh the public health part of it when the lockdown happened,” said Dr. Edward S. Rubin, the acute and chronic pain management doctor who is part of Marni’s medical team. “After six or seven weeks people were in such distress, I opened up (treatment) for one person at a time. I would spend six or seven hours on a Saturday doing one person.”

Dr. Rubin brought Marni in for treatments on back-to-back weekends in late April. He offered to do more, but the other shoe dropped and Marni had to refuse additional treatments.  Marni and husband John came face-to-face with another reality many rare disease families confront – financial struggles and hardship.

John’s main source of revenue dried up when the entire state of New York court system shut down. He’s an attorney with his own practice so his main source of income evaporated. And when Dr. Rubin offered another round of infusion treatments, the reality was the Cartelli’s couldn’t afford it.

“I feel so much guilt with the financial side of it. John is our income. I get some disability but it’s not much. The financial side of it always weighs heavily on me,” Marni said. “He felt terrible about what was going on, he was watching me deteriorate and struggle. He was willing, if it came to it, to deliver Uber Eats to make some extra money so I could get another treatment.

“My guilt was off the charts. I got the two treatments and I stabilized enough that I figured I could ride it out. It’s torture because I know the money is not there and I also know I’m headed back over that edge. I’m up at night.  I’m shaking.  My body is breaking down. John is feeding me. It was a dark place.”

She went into a physical and mental free fall she never saw coming. It led her to places she thought were well behind her on her rare disease journey. The end result was several dark and difficult months in lock down.

The loss of hope and that feeling nobody is listening when you are screaming out for help came roaring back for Marni. It was a road she had been down before when she was originally diagnosed in 2016, and didn’t think it was a bridge she would have to cross again.

“That anger and frustration I felt. I pulled away from everyone and I got depressed is the best way of putting it,” she said. “I felt like at times I might as well just crawl in a hole and be done with all this fighting that I’ve been doing. It changed how I view myself. I realized I’m not as over things in terms of my diagnosis and my progress as maybe I thought I was. I really honestly thought I was over it and had moved on and was this bad ass advocate. I’m definitely not.

“I’m still questioning my place. I’m still mourning my old life. And going forward, I’ve wondered what is my value or worth. I think this pandemic brought out some of the best and some of the absolute worst in us as individuals and as a society.”

As she and John started to pick up the pieces and once again focused on what was required to keep moving forward, Marni discovered going back to her roots as a rare disease patient would play a pivotal role.

“This is our world every day. We are screaming at the top of our lungs all the time about needing more help. The mental health side of this is very real for patients and this has made something difficult already even tougher.”

Marni Cartelli

A chatterbox and outgoing person by nature, Marni found a level of support, inspiration and hope back in 2016 by interacting with other patients with shared experiences inside the Rare Disease Community. Those relationships and friendships fueled her passion.

Marni knew, though, she needed another shot of hope and inspiration to keep battling and fighting. Her passion flame needed another light from the match.

She found it. Only this time it centered around sports – particularly her love of football.

Marni first came in contact with Uplifting Athletes in 2017 at the Global Genes Patient Advocacy Conference. She overheard the team from Uplifting Athletes at the conference talking about football during lunch. Marni is a huge NFL fan and loves her New York Giants. So hearing football talk had her full attention. She had no idea who or what Uplifting Athletes was. But she knew if people were talking football, she wanted to join the conversation.

That was the roots of a blossoming patient-focused relationship using football as the common bond to forge a kinship centered on Uplifting Athletes’ mission and vision colliding to help inspire hope in a patient.

While watching her beloved New York Giants during the NFL My Cause, My Cleats campaign in 2018, she took notice that Giants Punter Riley Dixon was wearing Uplifting Athletes cleats in support of the Rare Disease Community.

Marni avidly supported the New York Giants for many years but this time, after seeing Riley’s cleats, she felt that the players were supporting her. Marni formed an instant bond with Dixon, an Uplifting Ambassador and former Syracuse punter. Since that game, Marni has worn her Riley Dixon No. 9 Giants jersey with pride to her infusions. 

The fact a group of athletes under the Uplifting Athletes umbrella cares is a source of great inspiration to Marni. She can feel their support and that impacts her.  It also ignites her fire to try and connect the patients in her circle closer with Uplifting Athletes so they know it, too.

“This is about the mental health and well being of the people who make up this community. The medical side of this pandemic presents a whole different set of challenges and obstacles. Those types of challenges we are used to coming together to overcome,” Marni said. “There’s a lot of anger in the rare and chronic community against society because society is acting like what they are going through is difficult.

“This is our world every day. We are screaming at the top of our lungs all the time about needing more help. The mental health side of this is very real for patients and this has made something difficult already even tougher.”

Inspired to move forward, and drawing on the lessons she learned during her dark days in lockdown during the pandemic, Marni is back sharing her fiery passion with others in the Rare Disease Community.

“One of the biggest lessons I’ve learned through all of this is I realized being an advocate is not about everybody else, it’s about me,” she said. “I used to think it was not about me. But I realized in order to help others, I had to take care of me. What happens to me has to mean something to me. I have to continue to fight for empathy for me and everybody else, too. Our community needs help.”

In an effort to introduce more rare disease patients to Uplifting Athletes’ mission, Marni formed a team for the upcoming Uplifting Athletes 7,000 Mile Challenge. Team Passionately Rare already has more than 40 members and Marni welcomes anybody inspired to support the rare disease cause to join her team and be a part of the 7,000 Mile Challenge. 

Why support rare now?


Nearly 30 million Americans are living with a rare disease and  COVID-19 continues to present a myriad of challenges that is not only impacting the patients but their families and caregivers as well.

At the top of the list is reduced access to vital medical care which, in turn, has exacerbated already existing challenges. Among those already existing challenges include an accurate diagnosis of a complex disease, limited treatment protocol options, financial struggles, absence of hope and mental fatigue for patients, families and caregivers. 

“I don’t think you need to have a rare disease to have had all of this impact you mentally,” said Dr. Justin Hopkin, the father of a son with a rare disease and a rare disease advocate. “Managing the mental aspect of all this has been difficult for everybody. Finances, jobs, social issues … all those things have weighed heavily on most of us, but we know it’s been especially hard on those living with a rare disease.”

The isolation some Americans are feeling as we navigate the obstacle course of this pandemic is how some rare disease patients feel everyday. 

Since March, medical research on diseases other than COVID-19 has taken a huge hit. There have been countless research studies abandoned, suspended or postponed. 

Much is still unanswered about the ultimate impact the pandemic will have on clinical trials, too. That’s because it is unclear how many of these studies will eventually restart and how long it will be before they begin again.

Clinical trials play a critical role physically and mentally for rare disease patients. They show researchers and doctors what does and doesn’t work, and are a critical vehicle for rare disease patients to receive or obtain life altering therapy.

A clinical trial being delayed, interrupted or canceled can be a tipping point for a rare disease patient . They don’t have the luxury in most cases of multiple clinical trials. And the delay, interruption or cancelation of that trial jeopardizes any hope they might have had and could even be life threatening.

All this is going to lead to a healthcare system already pushed to its extreme limits by this pandemic becoming backed up and slowed even more. And it will directly and adversely impact a Rare Disease Community that faces an uphill climb under optimal conditions.

“Like everyone else, what we are hearing from the patients in our community has been tough,” said Kathi Luis, a rare disease advocate. “There was a lot of hopelessness, without their rehab, medication, treatments, clinical trials delayed or canceled … they didn’t have any hope. They are really defeated.”

In April, the National Organization For Rare Diseases (NORD) reached out to patients to gauge the best way to guide support and help for the Rare Disease Community.

Nearly 800 people responded to the survey from NORD’s research team and the results were made public last month.

95 percent of the respondents said they have been impacted at a cost to both their immediate and long-term health and well-being. Nearly three-quarters have had a medical appointment canceled and, of those, 65 percent were offered an alternative appointment via phone or video. 69 percent of the respondents have concerns about medication and medical supply shortages.

“Treating rare and medically complex cases like mine takes multimodal approaches. Remove one piece of the puzzle and the care patients receive results in sub-optimal outcomes. COVID-19 further exposed a glaring problem in the healthcare system by asking us what defines essential medical treatments,” said Marni Cartelli, a rare disease patient. “What if a treatment on its face doesn’t keep someone alive but is supplemental to one that does? Also, we must ask ourselves, is keeping someone alive the only essential medical service? What about keeping someone’s ability to feed themselves? These are all questions I ask myself every single day but society only had to ask itself in this pandemic.”

The time for action to support the Rare Disease Community is now. As we all adjust to what is the most recent new normal, the mental fatigue associated with the unknown for rare disease patients continues.

Uplifting Athletes is uniquely positioned to inspire hope in the Rare Disease Community. The 7,000 Mile Challenge is a way for YOU to get active and rally support for the rare diseases this summer.

Inaugural 7,000 Mile Challenge to support the Rare Disease Community set for July 17-26


Uplifting Athletes is proud to announce the inaugural 7,000 Mile Challenge – a 10-day event starting July 17th that will bring focus and attention to the more than 7,000 known rare diseases.

People affected by a rare disease are fighting against a finite clock that didn’t stop because of COVID-19. We’re letting the Rare Disease Community know that we won’t stop fighting for them!

“We are rallying our extensive network behind one initiative this summer so that we can continue to support our friends and partners in the Rare Disease Community,” Uplifting Athletes Executive Director Rob Long said. “Our team has worked hard to find a way to afford everyone the opportunity to take action and help the Rare Disease Community.”

It does not matter whether you are a casual walker, an avid runner, swimmer or roll on wheels of any kind, you can help make a difference for the Rare Disease Community. To participate in the 7,000-Mile challenge join an existing team, create a new team for you and others, or participate as an individual.  

Track and add your mileage to the collective Uplifting Athletes total using any single day or combination of days throughout the 10-day challenge. You can collect pledges for every mile you contribute to the challenge to support the mission of Uplifting Athletes. 

Join Uplifting Athletes wherever you are July 17th to 26th and rally your support for the Rare Disease Community through activity, donation or both!

To pre-register and start helping Uplifting Athletes Tackle Rare Diseases, visit upliftingathletes.org. Now is a time for action so no one in the Rare Disease Community lives without hope.

Proceeds from the 7,000 Mile Challenge support the mission of Uplifting Athletes and its charitable programs: Rare Disease Awareness, Rare Disease Research, Uplifting Leaders and Uplifting Experiences.

Any questions about the 7,000 Mile Challenge, please send an email to info@uplitingathletes.org.

Uplifting Athletes cancels all annual Lift For Life events for 2020


COVID-19 has led to many adjustments of the college athletic schedule. The football student-athletes and programs Uplifting Athletes work with face a condensed time frame to prepare for the upcoming season under heightened safety precautions.

In order to avoid any additional pressure, Uplifting Athletes made the decision to cancel all our annual Lift For Life events this summer.

On behalf of the Rare Disease Community Uplifting Athletes serves, thank you to everyone who has supported Lift For Life in the past. We look forward to a full Lift For Life schedule in 2021.

Lift For Life is the signature event for universities across the country that are part of the Uplifting Athletes nationwide network of chapters.

It is more important than ever for Uplifting Athletes to be there for our friends and family affected by Rare Diseases. Please stay tuned for a big announcement on Monday June 22 on how you can help rally support for the Rare Disease Community this summer.

21 NFL Prospects join 2020 Reps For Rare Diseases campaign during NFL Combine


For the sixth consecutive year, Uplifting Athletes is empowering NFL prospects with the opportunity to use the NFL Combine as a platform to give back by raising funds and awareness in support of the Rare Disease Community.

Reps For Rare Diseases has been used as a way for athletes to give back at a pivotal point in their quest to play at the highest level as they put their skills on display for NFL teams.

Since its inception in 2015, more than 100 players have participated in this campaign through either the NFL Combine or NFL Pro Day workouts.

This year Uplifting Athletes currently has 21 players who chose to participate in Reps For Rare Diseases 2020 at the NFL Combine including: Grayland Arnold, JaMycal Hasty, Denzel Mims, Clay Johnston, James Lynch and Chris Miller from Baylor, Davion Taylor from Colorado, Jalen Elliott, Alohi Gilman, Tony Jones Jr., Cole Kmet, Chris Finke and Julian Okwara from Notre Dame, Juwan Johnson from Oregon, Rob Windsor from Penn State, Kevin Davidson from Princeton, Sterling Hofrichter and Kendall Coleman from Syracuse, Reggie Robinson and Trevis Gipson from Tulsa and Shaun Bradley from Temple.

“During Combine and Pro Day training, so much time and energy is focused by these young men on achieving their dreams of playing in the NFL,” former NFL player and Uplifting Athletes’ Chapter Success Manager Levi Norwood said. “It is amazing to see so many NFL hopefuls realize, especially during this tiring and grueling process, how impactful their platform can be. We are honored they chose to stand alongside Uplifting Athletes and the Rare Disease Community.” 

Fans and supporters can pledge towards the performance of any one of our NFL Combine participants this year and help Uplifting Athletes tackle rare diseases.

Visit the Uplifting Athletes Reps For Rare Diseases 2020 team landing page, choose your favorite player and make your pledge today.

Horizon Therapeutics plc and Uplifting Athletes announced a new partnership for the 2020 Reps for Rare Diseases campaign. Horizon will match donations up to $35,000 through its #RAREis program, which is dedicated to providing individuals living with rare disease and families access to resources that connect, inform and educate as they navigate their daily lives.

“Thank you to all the athletes participating in Reps For Rare Diseases and good luck as you continue your football journey,” Uplifting Athletes Director of Sports Impact and NFL veteran Brett Brackett said. “This group of athletes displays the empathy and character that helps them stand out amongst their peers. Any NFL team would be lucky to have one of these men representing their organization.”

The proceeds from the 2020 Reps For Rare Diseases campaign support the mission of Uplifting Athletes and its charitable programs: Rare Disease Awareness, Rare Disease Research, Uplifting Experiences and Uplifting Leaders.

Meet Uplifting Athletes 2019 Rare Disease Champion Team member Sam Heckel from Syracuse University


Starting this season, the focus of the Rare Disease Champion Award shifted to a team concept in order to provide a platform to recognize all the qualified leaders that have made a significant and lasting impact on the Rare Disease Community. The Rare Disease Champion Team ensures all the inspiring rare disease stories of qualified leaders in college football are shared and celebrated. Uplifting Athletes will honor the 2019 Rare Disease Champion Team at the Maxwell Football Club Awards Gala in Atlantic City and at the Uplifting Athletes Young Investigator Draft in Philadelphia March 6 and 7, respectively.

Sam Heckel

University: Syracuse University

Vitals: 6-4, 280-pound, redshirt junior, offensive line

Quick Hits: A native of Wisconsin, Sam lives with congenital thrombotic thrombocytopenic purpura (TTP), a rare blood disorder that does not allow for the production of the ADAMTS13 enzyme, which breaks down large proteins. In order to help his body manage this rare disease, he must undergo 14-20 hours of plasmatherapy every two weeks, including during the football season. When he arrived on campus, Sam learned about the strong tradition of leadership within the Syracuse Chapter of Uplifting Athletes and, being a rare disease patient himself, the cause had purpose and special meaning to him. He attended the Leadership Development Conference in 2018 and 2019 and has been the Syracuse Chapter President the past two years. A full-time starter in 2017 on the Orange offensive line, Sam rotated as the sixth man in 2018 and played in every game. This season he earned the job as the starting center before injuries forced him to the sideline early in the year.

INSIDE THE STORY

From the time he nearly died while in elementary school because doctors struggled to diagnose his rare disease, Sam has faced long odds as an athlete.

His TPP diagnosis would require monthly treatments for the rest of his life.  At one point he wasn’t sure doctors would even allow him to play contact sports and Sam was always balancing his medical condition with being an elite athlete.

His dream to be a Division 1 college football player drove Sam on the field, in the classroom and at the hospital. With the help of a strong support team, led by his family, a scholarship to Syracuse allowed him to realize his dream.

The demands of being a student-athlete kept Sam inside that bubble of structure and routines he already was familiar with. Practices, workouts, meetings, classes and studying – the routine of it all was very comfortable to Sam.

“It’s almost a miracle that I got to be a college football player and am living my dream,” Sam said. “All throughout my life I’ve had to rely on other people … my parents, doctors, trainers. Whenever I wanted to do something, I had to rely on other people so much.”

It took a strong and dedicated support team around Sam just to make it to Syracuse, and once that circle of trust expanded in college, it was easy for him to find success.

He was a starter sooner than later for the Orange along the offensive line. Sam filled in at a couple spots up front in 2018 and became an experienced veteran. Coming out of camp prior to the 2019 season he was named the starting center. Once again Sam overcame the odds and was poised to take that next step as a football player.

In the first game of the season, Sam suffered his third concussion in 13 months. And the odds were simply too stacked against him with three head injuries in such a short period of time.

He worked through the recovery protocol as instructed, continued to stay involved with the team and held out hope of once again stepping on the field inside the dome at Syracuse to play the game he dearly loves.

The biggest challenge in his life, overcoming his rare blood disorder to play football, didn’t keep him off the field. Three concussions did, though.

Sam was medically disqualified from ever playing football again following the 2019 season. It was a sudden end he admits, but also said it took him about a minute to accept the diagnosis.

“Being a collegiate athlete, everyone knows it’s going to come to an end. I just didn’t know it was last season. The suddenness of it, that was the harder part for me,” Sam said. “It was a difficult transition for sure, having that taken away from you. I wasn’t used to being a non-athlete.”

Sam is still adjusting to life as a student instead of a student-athlete. He plans to remain involved with the team, helping out the younger players and doing what he can to make a positive contribution to the football team. It’s what he worked so hard to do on the field. Now he’s re-directing that same passion and energy in another direction.

Despite being medically disqualified, Sam will remain on scholarship at Syracuse. He will receive his undergraduate degree in the spring, stay involved with the team in 2020 and begin work on his Master’s degree.

“I still feel like I’m still trying to grasp who I am outside of being a football player,” Sam said. “I’m figuring out it’s all about re-directing your energy as a person. Now I can re-direct my energy in different directions. I have time, and I get to choose a little more what I had to put my energy toward.

“I’m more independent and rely on myself more, and I’m enjoying it. Football and Syracuse gave me everything I ever needed and wanted. I’m so grateful for that. That’s why I feel I have to stay involved and give back.”

THE RARE JOURNEY

Sam was born with thrombotic thrombocytopenic purpura (TTP), a rare blood disorder that does not allow for the production of the ADAMTS13 enzyme, which breaks down large proteins.

Early in his life, obtaining an accurate diagnosis was difficult and once doctors were able to pinpoint his rare disease, coming up with a functional treatment protocol proved tricky as well.

For most of his life, Sam received 14-20 hours of plasmatherapy every three weeks. It was a day-long process that also came with a couple days of recovery to feel normal. Despite nearly dying when he was in elementary school, Sam’s treatment allows him to live a normal life.

He was a star offensive lineman during his high school days at Waukesha West in Wisconsin and that landed him a scholarship offer from Syracuse.

Playing major college football was always the pie-in-the-sky dream for Sam and getting recruited to upstate New York allowed him to fulfill that life-long goal.

As a kid growing up, despite his rare blood disorder, Sam wanted to be on a level playing field with his peers. He didn’t want to be known as the football player who also had a rare disease. So he was extremely hesitant about sharing his journey.

That changed when he arrived at Syracuse.

Once on campus, Sam learned about the strong tradition of leadership within the Syracuse Chapter of Uplifting Athletes and, being a rare disease patient himself, the cause had purpose and special meaning to him.

Still reluctant to talk about his rare diagnosis because he preferred to let his play on the field speak for itself, Sam soon discovered he had a story to share that needed to be shared. Inspired by his work as a leader of the Syracuse Chapter, Sam learned his voice is strong and his platform as a college football athlete is significant.

WHAT THEY SAID

“I feel like with the position I was in with Uplifting Athletes, I realized there are some kids out there right now that are in the same shoes I was in growing up. And if what I went through can help them … give them some hope in any way and let them know they can still have hope no matter what they are going through, they need to know that. You can’t let a health issue determine what you are going to do with the rest of your life. I know the Rare Disease Community doesn’t have a lot of athletes out there, and I’m one of them. So I had to do what I could to help.” – Sam Heckel

39 Uplifting Athletes Chapter Leaders put through paces in Atlanta during 11th annual Leadership Development Conference


The cornerstone of the Uplifting Leaders program is our network of Chapters on campuses across the country led by college football student-athletes.

This past weekend, 39 leaders from 20 schools gathered in Atlanta for a high impact and fast paced weekend of learning and development during our 11th annual Uplifting Athletes Leadership Development Conference.

The 2020 conference provided an opportunity for our Chapter leadership to develop relationships that stretch beyond the football field, to absorb enhanced mission and vision insight based on Uplifting Athletes’ four programs – Rare Disease Awareness, Rare Disease Research, Uplifting Experiences and Uplifting Leaders – and to plot a chapter strategy for 2020.

“The difference for me this year was it’s a new group of guys mostly, but you establish similar quality of relationships,” said Clemson Chapter leader and Tigers’ long snapper Jack Maddox, who was attending his second conference. “I have a year of experience now, so I know more about what’s going on. I’m not overwhelmed as much and I know what we can and can’t do at our chapter. It’s such a valuable weekend.”

Following a meet-and-greet dinner Friday night, the conference kicked off Saturday with a full day of programming. Four breakout sessions led by Uplifting Athletes staff were followed by an “entering the real world” question-and-answer session with former college athletes.

The highlight of Saturday was the Uplifting Experience at the College Football Hall of Fame where 24 rare disease patients, caregivers and families were connected with the Chapter leaders to spend a couple hours experiencing the Hall of Fame together.

“I loved that the athletes had an opportunity to meet individuals with rare diseases outside of a hospital setting,” said Carol Unger, whose 32-year-old son Matthew is diagnosed with the ultra rare disease WAGR Syndrome. “I feel it is important to note that our children grow up, although some may still be at the maturity level of a 7 or 8 year old, and cherish those opportunities to meet with folks from the outside world.”

The first day of the conference closed out with a work session on three of Uplifting Athletes’ main events – Lift For Life, Reps For Rare Diseases and Touchdown Pledge Drive.

“Since Penn State is such an established chapter, my journey here is to learn what else can we do next to help support the Rare Disease Community,” said Penn State Chapter leader and long snapper Chris Stoll, who is in line to be the next PSU Chapter President taking over for quarterback Sean Clifford.

“I’m very excited to be more involved at another level. Sean did a great job and put a lot into it. But he’s our starting quarterback now and that’s a big job. I’m pumped to be here again and to meet so many guys who have passion for the rare disease cause and for using their platform to make a difference. And I’m very excited to get more involved at the next level.”

Sunday started with Dr. David Fajgenbaum, a former Uplifting Athletes Young Investigator Draft grant recipient, founder of the Castleman Disease Collaborative Network and rare disease research pioneer, sharing his story via a live video conference.

The conference wrapped up with some additional highlights of Uplifting Athletes’ programming that is available to support the rare disease cause and a work session to kick off 2020 at the chapter level.

A special thank you to all our sponsors and supporters who made this conference possible, Deloitte, Sanofi Genzyme, Jean Campbell and JFC Consulting and the College Football Hall of Fame. With your help, these young men are making a difference in the Rare Disease Community.

Meet the 2019 Uplifting Athletes Rare Disease Champion Team


Uplifting Athletes is pleased to announce the 2019 Uplifting Athletes Rare Disease Champion Team.

For 12 years, Uplifting Athletes has recognized a Rare Disease Champion. Starting in 2019, the focus of the Rare Disease Champion Award shifts from highlighting an individual leader in college football to a team concept that provides an opportunity to recognize leaders in college football that have made a positive and lasting impact on the Rare Disease Community. 

The five members of the 2019 Uplifting Athletes Rare Disease Champion team are: 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.

Uplifting Athletes couldn’t be more proud to share these inspiring rare disease stories of leaders in college football.

“We feel strongly that our obligation to the Rare Disease Community is to share the powerful and compelling stories of people inside college football who have lived the rare disease journey, as patients and advocates,” Uplifting Athletes Executive Director Rob Long said. “I believe this will be the start of a tradition recognizing those in college football who are inspiring, serving and supporting those who need it the most.”

The Rare Disease Champion Team powered by Sanofi Genzyme is an Uplifting Athletes awareness campaign that is part of the National College Football Awards Association (NCFAA). The Rare Disease Champion Team will be celebrated at the Maxwell Football Club Awards Gala at the Tropicana Casino & Resort in Atlantic City, N.J. on March 6, 2020 and at Uplifting Athletes’ Young Investigator Draft at Lincoln Financial Field Philadelphia March 7, 2020.

Nominees for the award were solicited from any NCAA FBS, FCS, Division II or Division III institution or college football program nationwide.

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, an FBS assistant coach and an administrator from AFCA. 

Former Austin Peay State University Offensive Coordinator and current University of Kansas Assistant Coach Joshua Eargle was honored as the winner of the Rare Disease Champion Award last year.

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.

Chapter Update: Penn State matches program standard with another 10-win season and seven teams post Week 14 victories


Penn State won for the 10th consecutive time at Beaver Stadium and, in the process of upending Rutgers on Senior Day, the Nittany Lions tied a double-digit victory standard for the program.

For the third time in four years Penn State has won at least 10 games. It marks the first time the Nittany Lions have accomplished three double-digit win seasons in a four-year span since 1993-1996.

Penn State has been stellar at home during this historic run – capping a third unbeaten slate at Beaver Stadium in the last four years. The last time that happened was 1972-1975.

Backup quarterback Will Levis made his first start and rushed for 108 yards. Running back Journey Brown chipped in with 103 yards and a career-high three touchdowns. The last time Penn State had a pair of 100-yard rushers was 2015 and the last time that combination was a QB and RB was 2005.

The Nittany Lions finished solo second in the Big Ten East behind undefeated Ohio State and are in line for a New Year’s Six bowl bid.

Baylor: Two years ago the Bears were a one-win team in head coach Matt Rhule’s first season in Waco. Their only victory in 2017 was on the road at Kansas. Two years later Baylor returned to Memorial Stadium in Lawrence and thumped the Jayhawks to complete a 1-11 to 11-1 turnaround and punched their ticket to the Big 12 Championship game Saturday. Baylor is the first Power 5 program to go from 1-11 to 11-1 in two years. In one of its most dominant conference victories in program history, the Bears rang up 264 yards on the ground, scored on five of their first six possessions and the defense produced six turnovers.

Clemson: The Tigers won their 27th game in a row, nailed down the eighth undefeated regular season in program history and third under head coach Dabo Swinney, by knocking off Palmetto State rival South Carolina. Junior running back Travis Etienne broke the ACC record for career rushing touchdowns with a three-yard blast in the fourth quarter for his 53rd career touchdown on the ground. His historic touchdown earned Etienne the Uplifting Athletes Rare Performance of the Week. Sophomore quarterback Trevor Lawrence completed 18 consecutive passes against the Gamecocks to set a school record for consecutive completions, surpassing the previous mark of 15. The 18 straight completions also tied the ACC record for consecutive completions.

Learn more about Florida State Chapter President and linebacker DeCalon Brooks in our Beyond The Trophy series

Northwestern: The Wildcats used a powerful running game and a stingy defense to subdue Illinois and claim the Land of Lincoln Trophy for a program-record fifth time in a row. Northwestern posted 378 yards on the ground and eclipsed the 350-plus yard mark rushing for the first time since 2012. Senior defensive lineman Trent Goens had a career day in his final game with three tackles for a loss (TFL), a quarterback hurry (QBH) and a forced fumble. Only one Wildcat has replicated that stat line since 2000 – Malcolm Arrington in 2008. Goens also finished with six tackles, five of them solo stops, and a pass break-up to power a defense that limited the Fighting Illini to 160 total yards.

Notre Dame: Trailing by 10 points in the first half, the Fighting Irish ripped off 24 unanswered points to reach the 10-win plateau for the third consecutive season and the fourth time in the last five years. Senior quarterback Ian Book became the first Fighting Irish in program history with 2,500 passing yards, 500 rushing yards and 30 touchdown passes in a season. He also became the first Notre Dame quarterback to throw four touchdown passes in a game five times in the victory over Stanford. 

Syracuse: Sophomore defensive back Trill Williams ripped the ball from Wake Forest’s Kendall Hinton at the six and raced 94 yards to the end zone to secure a six-point overtime victory for the Orange at home. Syracuse scored first in OT on a 40-yard field goal. The Demon Deacons were on the move in extra time before Williams stepped in. Each team kicked a 40-plus yard field in the final minute of regulation to force overtime.

Kent State: For the first time since 2012, the Golden Flashes are headed to a bowl game after posting their third consecutive win to reach 6-6 overall by taking out Eastern Michigan on Black Friday. This is only the fourth season Kent State in bowl eligible in the last 30 years. Jamal Parker put the Golden Flashes in the driver’s seat by returning the second-half kickoff 96 yards to give Kent State a three-score lead on the road. EMU pushed back and made it a one-score game in the fourth quarter before the Golden Flashes defense picked off a pass late to earn a bowl invitation for 2019. Junior quarterback Dustin Crum completed 68.3 percent of his passes this year and finished the regular season with an NCAA QB Rating of 155.97. Both those numbers are the best in Golden Flashes program history.

Illinois: The Illini held their 118th annual football banquet Sunday and Illinois Chapter President and tight end Bobby Walker was recognized for his work with Uplifting Athletes in receiving the Service Above Self Award. Despite the loss at home to Northwestern on Senior Day, the Fighting Illini finished 6-6 this year and are bowl eligible for the first time since 2014. Junior kicker James McCourtnailed a 50-yard field in the third quarter against the Wildcats to give him four field goals this season of 50 or more yards. Those four long-range kicks ties the Fighting Illini program record for number of 50-yard or longer field goals in a season.