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.

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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.

Dramatic last-second FCS playoff victory by Colgate highlights Week 14 Chapter Update


Colgate Weekly NewsletterColgate hosted its first playoff game in 15 years, and the wait was well worth it.

Junior kicker Chris Puzzi set a school record with his 15th field goal of the season – drilling a 38-yard kick just inside the right upright as time expired to win it for the Raiders.

Next up for the No. 8 seed is a road game against perennial NCAA FCS powerhouse North Dakota State in Fargo.

The winning field goal was Puzzi’s third of the day and moved him past Jonah Bowman into the No. 1 spot for field goals made in a single season.

Colgate’s 23-20 triumph over No. 6 James Madison is win No. 10 on the season for the Raiders and marks only the fourth time in program history a team has reached double-digit victories.

In a game where neither team led by more than seven points, Colgate was afforded the last chance at victory when it stopped JMU on a fake-punt attempt at the Raiders 41-yard line with 2:46 to play.

Two plays later sophomore quarterback Grant Breneman, who saw his first action in a month after an injury, hit Owen Rockett with a 26-yard strike to put the Raiders well inside Puzzi’s range. Breneman finished with 223 total yards and accounted for a pair of touchdowns. But he was 8 of 11 for 130 yards with a TD pass and a rushing touchdown in the second half.

Colgate’s record setting defense came up with five interceptions, led by Tyler Castillo snaring a pair of picks.

Clemson: The undefeated and College Football Playoff bound Tigers became the first school in ACC history to win four consecutive titles outright by rolling over Pitt in the championship game 42-10. Travis Etienne rushed for 156 yards and a pair of touchdowns on only 12 carries to pace the Clemson. The Tigers defense, shredded for more than 500 passing yards the week prior in a victory over rival South Carolina, limited the Panthers to 8 yards through the air.

Northwestern: Despite scoring back-to-back touchdowns on consecutive possessions to start the second to trim Ohio State’s lead to a field goal, the Wildcats came up short against OSU in the their first appearance in the Big Ten Championship game. Northwestern had a season-high 10 tackles for a loss and averaged 6.1 yards per play offensively, but it still wasn’t enough against the firepower of the Buckeyes.

Penn State: Current chapter leader and former Penn State Chapter President Trace McSorley is one of 13 finalists for the William V. Campbell Trophy who will be in New York City Tuesday night to find out who wins the annual scholar-athlete award presented by the National Football Foundation. McSorley has one final game to quarterback for the Nittany Lions and will leave Happy Valley as the most decorated quarterback in school history. The senior from Virginia, whom most FBS schools recruited as a defensive back, holds Penn State’s career records for: passing yards (9,080), passing touchdowns (71), total offense (10,590), rushing touchdowns by a quarterback (27), touchdowns responsible for (98), 300-yard passing games (10) and 200-yard passing games (26).

Illinois: Senior offensive lineman and Chapter President Nick Allegretti wrapped up his stellar Illini career and earned second-team All-Big Ten honors. Allegretti, a finalist for the 11th Rare Disease Champion Award, made 37 consecutive starts and logged nearly 2,500 snaps to complete his Illinois resume. The football program recently honored Allegretti by awarding him the Service Above Self Award for his commitment to giving back. In addition to being a finalist for the Rare Disease Champion Award, Allegretti is a 2018 Jason Witten Man of the Year semifinalist, 2018 Campbell Trophy semifinalist, 2018 Senior CLASS Award candidate and is a two-time Wuerffel Trophy nominee and AFCA Good Works Team watch list honoree. He was also a semifinalist for the National Football Foundation William V. Campbell Trophy as a top scholar-athlete.

Princeton: Senior quarterback John Lovett claimed the Ivy League’s 2018 Football Offensive Player of the Year. This is the second time in three years Lovett has claimed the award. Lovett is the fifth two-time winner of the Bushnell Cup, joining an esteemed club that includes Cornell’s Ed Marinaro (1970-71), Yale’s John Pagliaro (1976-77), Harvard’s Carl Morris (2001-02) and Harvard’s Zack Hodges (2013-14). He is the 12th Bushnell Cup winner from Princeton and the third-straight Tiger quarterback to be named Offensive Player of the Year (John Lovett, 2016; Chad Kanoff, 2017).

Uplifting Athletes has eight teams that will play at least one more game before their 2018 season is complete. Notre Dame and Clemson are two of the four squads in the College Football Playoff and Penn State (Citrus), NC State (Gator), Northwestern (Holiday), Syracuse (Camping World), Baylor (Texas) and Western Michigan (Famous Idaho Potato) are headed to bowl games.

 

 

 

 

 

 

 

 

 

Five Uplifting Ambassadors shine a spotlight on rare diseases during NFL My Cause My Cleats


CAM CLEATS 2We are proud to share that five NFL players have chosen to shine a spotlight on the rare disease cause with their cleats.

The NFL’s annual My Cause My Cleats kicked off this week and Uplifting Athletes cleats will be worn in NFL games by Cameron Lynch, Riley Dixon, Malik Turner, Garry Gilliam and Zaire Franklin.

All five of these players are from schools that have a college football student-athlete led Uplifting Athletes Chapter.

“What strikes me is these NFL players supporting the Rare Disease Community have a choice to make when it comes to their cleats. This is very personal decision for them. We are thrilled they chose their platform to support our cause with their cleats. Collectively we are shining a spotlight on rare diseases and inspiring others with hope.” – Uplifting Athletes Executive Director Rob Long

Cameron Lynch, LB, Tampa Bay Buccaneers

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Lynch arrived at Syracuse University when the Orange players were working to start an Uplifting Athletes Chapter. This is the second consecutive year Lynch has made rare diseases his cause.

“During My Cause, My Cleats, I have decided to support the mission of Uplifting Athletes and the 30 million Americans affected by rare diseases. Approximately 50 percent of people affected by rare diseases are children and I am proud to help spread the word so that those battling rare diseases know they are not alone.” – Cameron Lynch

Riley Dixon, Punter, New York Giants

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Dixon came to Syracuse when Long was a GA and the common bond of being punters sparked a lasting friendship. This is the second year Dixon has supported the Rare Disease Community with his cleats.

“Uplifting Athletes raises money as well as empowers people to take action against rare diseases – when I was at Syracuse, our long-snapper Sam Rodgers, started Uplifting Athletes for former Syracuse punter Rob Long, who had brain cancer in 2010 and is seven years cancer-free. Through the college sports platform, we raise money for these rare diseases.” – Riley Dixon

 Malik Turner, WR, Seattle Seahawks

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The rare disease cause has become very personal for the Seahawks rookie and former Illinois standout. He was introduced to the cause through the Illini Chapter, was moved by a personal story of a fellow Illinois student he met in class and has extended that 1-on-1 relationship to the NFL by recently hosting a rare disease patient family for an Uplifting Experience at the Seahawks facility.

“What draws me closer to the rare disease cause is personally connecting with someone that has gone through the struggle. That definitely drew me closer to it.” – Malik Turner

Zaire Franklin, LB, Indianapolis Colts

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Franklin participated in every Lift For Life during his time at Syracuse and has become an Uplifting Ambassador in 2018. The Colts rookie participated in Reps For Rare Diseases in conjunction with his NFL Pro Day and is now using his cleats to show the Rare Disease Community his commitment to the cause to inspire them with hope.

Garry Gilliam Jr., OL, San Francisco 49ers

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This is the second in a row year Gilliam has used his cleats to highlight the rare disease cause. During his time at Penn State Gilliam participated in Lift For Life and was a strong fundraiser to support the mission of Uplifting Athletes. Gilliam played high school football in the same Central Pennsylvania conference as Uplifting Athletes Founder Scott Shirley so Gilliam was familiar with the rare disease cause when he arrived at Penn State and has remained a supporter for nearly a decade.

In conjunction with My Cause My Cleats each member of the Uplifting Athletes team has agreed to run a fundraising campaign to support the cause and help Tackle Rare Diseases.

Please consider making a donation to one of these five Uplifting Ambassadors today!

The proceeds from My Cause My Cleats support the mission of Uplifting Athletes and its charitable programs: Rare Disease Awareness, Rare Disease Research, Uplifting Experiences and Uplifting Leaders.

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 Austin Peay State University offensive coordinator Joshua Eargle


EARGLE 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: Joshua Eargle

University: Austin Peay State University

Position: Offensive Coordinator

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

Eargle: My daughter Landrey is in a fight, every single day…a fight to live, a fight to overcome the illness that’s been handed to her in life. What I’ve learned is that Landrey and all of us are not alone. She might be the only one diagnosed in the U.S. with her condition but she isn’t alone. You might not be physically ill or have a sick child, but all of us have adversity in our lives. How do you respond to your circumstances in that battle? How do you respond when you can’t control the outcome? Each of us has a choice…to fight and push through with joy or let the unfair circumstances overcome us. Every day, when I kneel by her bedside, when she wakes up, my little Landrey wakes up with a smile on her face. She might feel very sick or just have had one of her many seizures she has in a day, but she chooses to smile. She’s taught me to choose joy today.

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

Eargle: It’s hard to pinpoint a single moment. I played for 10 years and now coached for 16. For me, it’s been on the coaching side. It’s realizing on a deep level that this game has the ability to allow you to become like a family to the young men I coach. It’s a term thrown around a lot, but truly making personal commitments to be there and serve when they need you. Throughout my career as a coach, I’ve had the unfortunate task of having a parent call me to go get their son and to tell them that the other parent has unexpectedly passed away. It’s happened three times. It puts everything into perspective in one phone call. It takes my breath away. Life is precious. My daughter is a daily reminder of that. Building relationships with these young men is profoundly important as you might be in their life during some of the toughest moments, but also some of the best as they unite with other brothers on the football field and challenge themselves to do something they couldn’t do alone.

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?

Eargle: One thing I’ve held on to is a verse from the Bible in Jeremiah 29:10 “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” Like many guys growing up now, I grew up without a father. My grandmother instilled this verse in me. I’ve come to learn over time that my Heavenly Father has purpose and a plan for my life.  He has planned my steps. There’s a lot of peace and hope when you let that sink in.

What is your favorite movie and why?

Eargle: Braveheart. I’m not sure why anyone would name anything else?

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

Eargle: Tom Landry for sure. My entire life I’ve looked up to him. I read a book on him a while back and I believe he lived his life with character. At the end of the day, anyone can turn football programs around, anyone can find a way to win, but what stands the test of time is HOW you win and whose lives you’ve impacted on the journey.

Your favorite aspect of being a part of college football?

Eargle: The opportunity to push young men who might not believe in themselves, to maximize every ounce of who they are, discipline themselves, unite with someone they didn’t know before to accomplish something no one ever believed they could. That gets me FIRED UP!

Last few songs you downloaded?

Eargle: You got me there….I don’t know if I’ve download anything recently. I do Spotify channels. Sometimes it’s encouraging stuff and sometimes I switch to some red dirt Texas country. I was born and raised in Texas.

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

Eargle: Last spring is a day I will never forget. The day doctors at Vanderbilt told my wife and I, there’s officially no cure for the condition my daughter has. Then the physician talked about the future of medicine …where we could be one day as country, but it would take awareness and eventual funding. Winning this award isn’t about me. This award could unlock the awareness and eventual funding we would need to study her condition. I would never want any parent or child to go through what we’ve endured. Winning this could be one step closer to see her and the children yet to be diagnosed live healthier 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.