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.

Kent State University football program joins Uplifting Athletes team and schedules inaugural Lift For Life event


Uplifting Athletes is pleased to have Kent State University join the nationwide network of chapters led by college football student-athletes.

Each chapter embraces the mission of Uplifting Athletes by using college football as a platform to inspire the Rare Disease Community with hope through the power of sport.

Today, the challenges faced by the Rare Disease Community are bigger than any one individual, team or organization can tackle alone. The Kent State Chapter, along with a nationwide network of teams, is uniquely positioned to educate and engage the local community to shine a spotlight on rare diseases.

The Kent State Football Chapter of Uplifting Athletes will hold its inaugural Lift For Life to support the Rare Disease Community on Friday, July 12th.

Lift For Life is the signature fundraising event for the Uplifting Athletes nationwide network of chapters.

“Having the opportunity to give back to others as a member of the Rare Disease Community myself is very important to me,” Kent State Chapter President and Golden Flashes wide receiver Antwan Dixon said. “Also, having my teammates and coaches being all in so that we can raise money for raise disease patients is such a blessing. We are all proud to be part of a team that is working so hard to Tackle Rare Diseases.”

The 2019 Kent State Chapter Lift For Life will be a competition featuring a 225-pound bench press competition between the Golden Flashes offense and defense. The Kent State Lift For Life is a private event this year.

Fans and supporters can select to support either the offense or defense and pledge for the average number of bench press repetitions they put up. So choose one side of the ball and back that team by visiting the Kent State Lift For Life fundraising page and pledging now! You can also make a flat donation to Lift For Life.

The proceeds from the Kent State Lift For Life support the mission of Uplifting Athletes and its charitable programs: Rare Disease Awareness, Rare Disease Research, Uplifting Experiences and Uplifting Leaders.

Uplifting Athletes is pleased to welcome Kent State University to its nationwide network of chapters led by college football student-athletes.

The Kent State football program was inspired to help Tackle Rare Diseases by Golden Flashes wide receiver Antwan Dixon, who returned to the field in 2019 after a 36-month absence while battling the rare blood disorder aplastic anemia.

Dixon was a finalist for the 11th Uplifting Athletes Rare Disease Champion Award. The 2019 Lift For Life is the first opportunity for the Kent State Chapter support the Rare Disease Community.

Please support the Kent State Chapter and help the Golden Flashes reach their impressive $2,000 team Lift For Life goal.

Former Illinois Chapter President Nick Allegretti awarded prestigious Big Ten Medal of Honor


September 2 2017 Illinois vs Ball State Football. Home Opener

Former University of Illinois star offensive lineman Nick Allegretti was awarded the prestigious Big Ten Conference Medal of Honor recently as part of the annual Fighting Illini Oskee Awards celebration.

This year marks the 105th anniversary of the Big Ten Medal of Honor, awarded annually to one male and one female student-athlete from the graduating class of each member institution who has demonstrated excellence on and off the field throughout their college career. The conference’s most exclusive award was the first of its kind in intercollegiate athletics to recognize academic and athletic excellence.

Allegretti was a two-time captain and finished his football career with 36 consecutive starts while playing nearly every snap on the offensive line over the last two seasons.

He was graded as the third-best offensive guard in the nation in 2018 by Pro Football Focus, allowing just one QB hit and zero sacks on the season while anchoring an offensive line that paved the way for the nation’s 12th-ranked rushing offense. PFF graded him as the No. 6 run-blocking guard and the No. 11 pass-blocking guard in the nation. 

Off the field, he was the team leader for all community service events throughout his career and served as Illinois’ Uplifting Athletes Chapter President the past two years, raising more than $88,000 to support the Rare Disease Community through the team’s annual Lift for Life event. He has been a candidate for many community services awards, including 2018 Uplifting Athletes Rare Disease Champion Award (Finalist), 2018 Jason Witten Collegiate Man of the Year (semifinalist), 2018 Campbell Trophy (semifinalist) and 2018 Senior CLASS Award candidate. 

Allegretti earned a Bachelor’s degree in accountancy from the Gies College of Business in December 2017 (3.56 cumulative GPA) and will earn a Master’s degree in Recreation, Sport & Tourism in May 2019 (3.49 cumulative GPA). 

“Few student-athletes garner as much respect from their peers and coaches as Nick has over the last five years,” said Fighting Illini head coach Lovie Smith, the Illinois skipper for Allegretti’s final three seasons. “Nick exemplifies what it means to be a student-athlete in today’s environment.

“If you are fortunate enough to coach long enough, you might get the chance to coach one or two student-athletes with Nick’s credentials on and off the field. I am grateful to be in the right place at the right time to catch him during his career at the University of Illinois.”

Rare Disease Community takes over Lincoln Financial Field at 2nd Uplifting Athletes Young Investigator Draft


2019 Young Investigator Draft grant recipients (left to right): Dr. Alberto Japp, Dr. Eugene Hwang, Dr. Shana McCormack, Dr. Elizabeth Harrington, Dr. Brian Sworder and Dr. Brenda Gallie.

Lincoln Financial Field in Philadelphia experienced a Rare Disease Community takeover Saturday night when Uplifting Athletes hosted its 2nd Young Investigator Draft presented by CSL Behring.

And the spotlight at The Linc – home to the NFL’s Philadelphia Eagles – was on the six rare disease research grant recipients drafted by our priority partners to become part of the Uplifting Athletes team.

“We could not of been more excited how the event came together, and what an amazing turnout we had for year two of this event,” Uplifting Athletes Executive Director Rob Long said. “We take pride in our ability to bring together doctors, patients, young investigative researchers, industry partners, rare disease advocates and athletes all together in one room. Each group was well represented.”

Similar to the NFL Draft where teams select the top young prospects they feel can make the most impact on their future, at the Young Investigator Draft, Uplifting Athletes celebrated its 2019 draft class in five different rare disease categories.

The evening started with a social hour that included one-of-a-kind stadium tours of Lincoln Financial Field.

Then it was time to kick off the 2019 Young Investigator Draft and hand out some authentic draft jerseys to research scientists in five rare disease categories: rare cancers, rare autoimmune and immunological disorders, rare blood disorders, rare genetic disorders and rare muscular and neurological disorders.

The 2019 Young Investigator Draft class includes Dr. Shana McCormack, Dr. Elizabeth Harrington, Dr. Alberto Japp, Dr. Eugene Hwang and Dr. Brian Sworder.

Several of the grant recipients said the process of being drafted was a “first” for them and despite being briefed and told how the evening would unfold they said there were no words that fully prepared them for the energy and excitement the evening created.

Young Investigator Draft grants are intended to inspire collaborative and translational research that will benefit the entire Rare Disease Community. The Young Investigator Draft stage provided each doctor a platform to educate and inspire by sharing their research along with its impact on the Rare Disease Community.

The drafted grant recipients were chosen by this year’s priority partners: Accelerate Brain Cancer Cure, Castleman Disease Collaborative Network, Friedreich’s Ataxia Research Alliance, Leukemia Lymphoma Society and Project ALS.

Each priority partner had a guest presenter make the selection. The 2019 list of guest presenters included Kyle Bryant, BethAnn Telford, Dr. David Fajgenbaum, Malik Turner and Adam Breneman.

After draft emcee Stephanie Stahl, a health reporter for media sponsor CBS 3 of Philadelphia, closed the draft it was time for a couple special presentations.

Dr. Brenda Gallie of Children’s Hospital in Toronto received the Uplifting Athletes Young Investigator Draft Collaborative Leadership Award for her decades of commitment to eradicating the rare eye disease retinoblastoma.

She was introduced via video by former USC long snapper and 2016 Uplifting Athletes Rare Disease Champion Award winner Jake Olson, who is legally blind after losing both is eyes to retinoblastoma.

To bring down the curtain on the evening, the 11th winner of the Uplifting Athletes Rare Disease Champion Award, University of Kansas football coach Joshua Eargle, took the stage and delivered a moving and inspirational speech.

Coach Eargle shared the story of his family and their rare disease journey with their daughter Landrey. For nearly six years the Eargle’s stayed quiet about their struggles with the extremely rare diagnosis for Landry.

After sharing their story publicly for the first time in 2019, doors and avenues have opened they never imagined. This has inspired Coach Eargle and his wife Kristen and made them even stronger advocates for the Rare Disease Community.

Uplifting Athletes would like to thank everyone who attended our 2nd Young Investigator Draft and a special thanks to all of our sponsors for making this unique approach to rare disease research possible.

In addition to CSL Behring as our presenting sponsor, Sanofi Genzyme, Horizon, PRA Health Sciences, Retrophin, Bristol-Myers Squibb, Spark Therapeutics, Strongbridge BioPharama, Amicus Therapeutics, We Work For Health (WWFH) and Ultragenyx all contributed to the success of the 2019 Young Investigator Draft.

“It took a lot of teammates who believe in the mission of Uplifting Athletes and have passion for the rare disease cause to make all this happen,” Long said. “The fact that our priority partners joined us in co-funding each grant recipient so that we could direct more than $120,000 directly to the young investigator rare disease researchers to be used at their discretion to support their research is a game changer.”

A successful 2018 Year In Review


HappyHolidays-UAMay your days be filled with Peace, Hope and Joy this Holiday Season!

On behalf of the 30 million Americans that comprise the Rare Disease Community, our staff and team of college football student-athletes thank you for your loyalty and support in 2018!  It has been a memorable year and we thank you for helping us achieve our mission.

Most recently, our team was able to be a part of an Uplifting Experience in Seattle. Former University of Illinois and current Seattle Seahawks wide receiver, Malik Turner, hosted a rare disease patient family for the day at the Seahawks facility. Turner continued to build on that relationship during the NFL My Cause My Cleats campaign by securing tickets for ADNP patient Tony Sermone and his family for the game. One of his cleats had the initials “T” and “S” on the back in Tony’s honor. After the game Malik was able to present the signed cleat he wore in the game to Tony.

MALIK YEAR END GRAPHIC

Without your support this type of Uplifting Experience would not be possible. Would you consider making a year-end donation to Uplifting Athletes?

2018 also featured plenty of new and exciting milestones for Uplifting Athletes including:

-New Uplifting Athletes chapters established at Western Michigan, Davidson and Lehigh.

-38 NFL prospects participated in our Reps For Rare Diseases campaign during their NFL Combine and individual pro day workouts.

-Held our inaugural Young Investigator Draft in August at Lincoln Financial Field in Philadelphia and scheduled our 2019 event for March 9th back at the home of the Philadelphia Eagles. The Young Investigator Draft is the result of our ongoing commitment to rare disease research. In 2018 we distributed six $10,000 grants to six individual researchers.

YID MAILCHIMP 1

-During the 2018 season, the first ever Rare Disease Awareness Games were held involving Uplifting Athletes Chapter match-ups between Syracuse vs. Western Michigan and Penn vs. Princeton. The chapters wore Uplifting Athletes helmets stickers, #WeTackleRare wristbands and recognized local rare disease patient families during a game break.

-We crowned Coach Joshua Eargle from Austin Peay State University as the 11th winner of the Rare Disease Champion Award – given to a leader in college football who has realized his or her potential to make a positive and lasting impact on the Rare Disease Community. We also enjoyed seeing our 10th winner of the award, Shaquem Griffin from UCF, selected in the fifth round of the 2018 NFL Draft by the Seattle Seahawks.

These are just a few of the 2018 highlights. We have bigger and bolder plans for 2019. As always, though, we need your help.

Please consider giving a gift to support the Rare Disease Community we serve. We can’t do any of this without you!

#WeTackleRare

Scott, Rob, Brett, John, Karen and Andy

 

 

Austin Peay State University Offensive Coordinator Joshua Eargle is the 11th winner of the Uplifting Athletes Rare Disease Champion Award


RDC 1819 WINNER GRAPHICAustin Peay State University Offensive Coordinator Joshua Eargle is the 11th winner of the Uplifting Athletes Rare Disease Champion award.

In a public on-line vote that started last month, Coach Eargle outlasted a field of finalists that included: University of Illinois offensive lineman Nick Allegretti; Stanford University linebacker Ryan Beecher; Kent State University wide receiver Antwan Dixon and Syracuse University offensive lineman Sam Heckel

“We are proud to honor Coach Joshua Eargle as the 11th Rare Disease Champion. The Eargle family’s story while unique, is shared with many other rare disease families across the country,” Uplifting Athletes Executive Director Rob Long said. “The willingness of coach and his family to use their platform to inspire other rare families will undoubtedly have a profound impact and bring awareness to the rare disease cause.”

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.

Coach Eargle will be honored as part of the Maxwell Football Club Awards Gala on March 8th in Atlantic City, New Jersey at the Tropicana Casino & Resort and during the Uplifting Athletes Young Investigator Draft/Rare Disease Champion Celebration on March 9th at Lincoln Financial Field in Philadelphia.

His daughter, Landrey, is the first known person in the United States to be diagnosed with the condition of a rare mutation of the CSNK2B gene. She battles myoclonic epilepsy, intellectual disability, a congenital heart defect, and immunodeficiency. She spent the first 73 days of her life critically ill on life support, enduring a major open heart surgery, surviving four codes.

Until the age of four, Landrey was critically or acutely ill 40 percent of her life. She’s battled through 15 hospitalizations, and there is no cure for this condition.

Coach Eargle is tenacious, but not because he would ever have wanted the battle it took to reveal the character developed through this. His daughter is at war every single day. Eargle’s strength and unrelenting fight is a calming presence to his daughter, and his calm under extreme pressure allows their family to have a laser focus on their mission rooted in inspiring others through faith, hope and joy.

Beyond The Finalist: Get to know Syracuse University OL Sam Heckel


HECKEL 1819 FINALIST GRAPHICThe Uplifting Athletes Rare Disease Champion Award, part of the National College Football Awards Association (NCFAA), is given annually to a leader in college football who has realized his or her potential to make a positive and lasting impact on the Rare Disease Community.

We afforded each finalist for the 11th Rare Disease Champion Award the opportunity to be featured in our Beyond The Finalist series.

Name: Sam Heckel

University: Syracuse University

Position: Offensive Line

What about your journey do you always make sure to share when telling your story?

Heckel: When sharing my journey I had only recently begun to share that I am a survivor of rare disease. When I was 9 I had an episode where my platelets dropped to about 4(normal amount is 200). On top of my immune system being in shambles my kidneys began to fail and that’s when I was granted a wish from the Make a Wish foundation. At the time I didn’t know what being a kid in that foundation meant but now I understand the severity of my condition. I really believe that my survival from that was a miracle.

Can you tell us your ‘welcome to college football (either as a player or coach) moment’?

Heckel: I would say my “welcome to college football moment” was our very first redshirt workout. In short, I had never been tested so hard, physically and mentally, before.

What is the one piece of advice or encouragement that’s stuck with you over time? Who gave it to you and what is it?

Heckel: I would say the biggest piece of encouragement came from my sister. She had written a speech on what I had overcame and how important it was for me to realize that, in theory, I shouldn’t be able to play contact sports but there is a reason for me to be in the position I am now. Moreover, despite the odds of me becoming a collegiate athlete I should never take that for granted.

What is your favorite movie and why?

Heckel: Favorite movie has to be Elf. I still find it hilarious even though I know most of the words.

If you could have lunch with any one person (dead or alive), who would you choose and why?

Heckel: I would probably say my Nana who passed away a few years ago. We’d always go to Culver’s or some sort of diner. I just miss that tradition.

Your favorite aspect of being a part of college football?

Heckel: The challenge. There is so much adversity that a student-athlete faces that I think it will make adult life easier.

Last few songs you downloaded?

Heckel: 2009- Mac Miller; Dunno- Mac Miller and Uproar- Lil Wayne.

What would winning the Uplifting Athletes Rare Disease Champion Award mean to you?

Heckel: It would be an honor to win this award. While all the candidates are deserving I have lived my entire life with this community. I know that winning this will create immense awareness for, not only TTP(my disease) research, but all rare diseases. I owe it to this community to represent someone who has lived with a rare disease my entire life and can still be successful. Living up with a rare disease can make a patient feel hopeless, I can attend to that. I just want to provide hope to those who deserve better treatment and a better life. With all that I have overcome I want to give back to the community that helped me survive what seemed to be inevitable death and show others that there is hope and that their rare disease can not contain what they can do with their lives.