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.

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-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.

Beyond The Finalist: Get to know Kent State University wide receiver Antwan Dixon


DIXON 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: Antwan Dixon

University: Kent State University

Position: Wide Receiver

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

Dixon: When telling my story I make sure people know about all the obstacles I had to overcome to get back to where I am now. I know this doesn’t answer the question but I don’t tell everyone enough about my mother (Shemariah Dixon). Even though my dad was my donor, I know if my mom was put in that position she would have done it with no hesitation. She was literally with me every single day that she could. Missing weeks of work and if she did go to work, she was trying to get back as fast as possible. There were many nights she didn’t sleep because I couldn’t sleep and I wish she could win an award for everything she did for me. But I know she feels she’s got an award in me still being on this earth.

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

Dixon: My ‘welcome to college football moment’ was at our first home game against Delaware State. It was my second game, the second series of the game I got my first career reception on a screen toward the middle for a touchdown.

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?

Dixon: My mom told me, after I didn’t run my fastest on play when I was younger, if you don’t use your gift that God gave you then it can be taken away from me at any time.

What is your favorite movie and why?

Dixon: Bad Boy II is my favorite movie because Martin Lawrence and Will Smith are great actors together and I love action comedies.

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

Dixon: I would have lunch with Inky Johnson. He is a great speaker and has been through a lot. I want to be a motivational speaker as well. It would be an honor to meet him.

Your favorite aspect of being a part of college football?

Dixon: I love being a role model. The kids after the game shaking your hand is my favorite aspect. Win or Lose, they still want to be like you and look up to you.

Last few songs you downloaded?

Dixon: Homebody by Lil Durk ft. TK Kravitz & Gunna; Every Season by Roddy Rich; Life Goes On by Lil Baby

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

Dixon: Winning the Uplifting Athletes Rare Disease Champion Award would mean a lot to me because it means that my story has reached many individuals around the world that may need an inspiration. I’ve met some great people throughout my journey and it would be a great accomplishment for me considering what I’ve been through. Being a nominee for this award is great too. Reading the stories of the other men makes it a honor for me to be in the running for this award with them.

Beyond The Finalist: Get to know University of Illinois offensive lineman Nick Allegretti


ALLEGRETTI 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: Nick Allegretti

University: University of Illinois

Position: Offensive Line

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

Allegretti: When my brother was diagnosed with his rare disease, I was extremely scared to hear the word cancer and as a young child and I was afraid of all of the negative things that would come with it. However, the doctors and my parents assured me that the treatment plan would get rid of his tumor and there would be nothing to worry about. I believed in this and after years of battling my brother was cured. As a naïve child I believed that this was how all illnesses worked and I did not realize that many people were turned away without a treatment plan. When I realized this, I finally understood how important the work that Uplifting Athletes is doing was to the Rare Disease Community and I knew that I had to help in any way possible.

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

Allegretti: I can remember the first time we had “optional workouts” over my first summer. In high school I played many sports and had multiple extra curriculars that would conflict with certain sports optional workouts. As a college athlete you have school and then football, and if it’s not class…it’s not a conflict.

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?

Allegretti: As a true freshman we were playing a game at Nebraska, which is an electric environment and I remember our offensive coordinator, Bill Cubit, telling us before the game to enjoy the moment and realize the magnitude of the event. From that game on I always tried to take a few seconds out of every game to truly understand how special playing college football is and how much it has meant to me.

What is your favorite movie and why?

Allegretti: Four Brothers – It is a movie about a group of four adopted brothers trying to avenge their mother’s death. I have probably seen some better movies before, but the connection that the brothers share is similar to the relationship that I have with my brother. And the family aspect of the movie, although quite violent, is one of a kind.

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

Allegretti: Alexander Hamilton – He is one of the founding fathers of our country and the first ever Secretary of Treasury and is largely responsible for the beginning of our country’s monetary system. As a coin collector that would go on the study and collect this system, I am very appreciative.

Your favorite aspect of being a part of college football?

Allegretti: My favorite part about being a college football player is the camaraderie that is built with your teammates. When you commit to a university, you usually know very few players and their backgrounds but by the end of your time you have built hundreds of relationships with people you never would have met without college football. And a lot of these relationships will last for life.

Last few songs you downloaded?

Allegretti: My Top 5 songs: The Devil Went Down to Georgia – Charlie Daniels Band; It’s a Great Day to Be Alive – Travis Tritt; In Color – Jamie Johnson; Watching You – Rodney Atkins; Springsteen – Eric Church

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

Allegretti: Winning this award would mean the world to me. From working with uplifting athletes over the past four years I have met some incredible people and heard some unbelievable stories within the organization. I have also learned how helpful Uplifting Athletes is for the Rare Disease Community and how important it is to spread the word to continue battling rare diseases. To be able to represent this organization and community as the Rare Disease Champion would be an incredible honor.

Uplifting Athletes announces five finalists to determine 11th winner of the Rare Disease Champion Award


RDC 1819 GRAPHIC 1Uplifting Athletes is pleased to announce that five finalists have been chosen for the 11th Rare Disease Champion Award winner.

The 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.

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

The five finalists chosen to determine the 11th winner of the award are: Illinois offensive lineman Nick Allegretti, Stanford linebacker Ryan Beecher, Kent State wide receiver Antwan Dixon, Austin Peay offensive coordinator Joshua Eargle and Syracuse offensive lineman Sam Heckel.

“We are privileged to recognize these five finalists and are humbled to share their stories,” said Uplifting Athletes Executive Director Rob Long. “We are excited to see who the public chooses as our 11th Rare Disease Champion, but we know all five of these finalists would make a great winner.”

A public online vote will be live from noon November 12th until midnight December 4th to determine this year’s Rare Disease Champion. You can vote once each day for your favorite finalist on the Uplifting Athletes Rare Disease Champion website.

The finalist with the most votes after voting closes at midnight on December 4th will be the winner. The champion will be officially announced on the red carpet from the Home Depot College Football Awards Show on December 6th.

Uplifting Athletes’ 11th Rare Disease Champion 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 as part of the Uplifting Athletes Young Investigator Draft/Rare Disease Champion Celebration on March 9th at Lincoln Financial Field in Philadelphia.

Past Rare Disease Champion winners include seven FBS players, one FCS player, a Division III quarterback and an administrator from AFCA.

Former UCF and current Seattle Seahawks linebacker Shaquem Griffin was the 10th winner of the Rare Disease Champion Award.