19 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 19 players who chose to participate in Reps For Rare Diseases 2020 at the NFL Combine including: Grayland Arnold, JaMycal Hasty, Clay Johnston, and Chris Miller from Baylor, Tremayne Anchrum and John Simpson from Clemson, Davion Taylor from Colorado, Derrek Tuszka from North Dakota State, Jalen Elliott, Alohi Gilman, Cole Kmet, Chris Finke and Julian Okwara from Notre Dame, Juwan Johnson from Oregon, Rob Windsor from Penn State, Kevin Davidson from Princeton, Kendall Coleman from Syracuse, Shaun Bradley from Temple, and David Woodward from Utah State.

“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.

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.

Beyond The Trophy 2019: Get to know Florida State Chapter President and linebacker DeCalon Brooks


Each week during the college football season we will feature a player who is an officer for an Uplifting Athletes Chapter for our Beyond the Trophy series.

Name: DeCalon Brooks

College: Florida State University

Height, weight, class, position: 5-10, 209-pound, redshirt sophomore, linebacker

High School: Gaither High School in Tampa, Fla.

About DeCalon: Became an impact player for the Seminoles as a redshirt freshman in 2018 by appearing in 11 games and making seven starts. Earned ACC Linebacker of the Week for his stellar career day against Louisville. DeCalon is the son of Derrick Brooks, a member of the NFL and Florida State Hall of Fame. This season he has appeared in 11 games and has 15 tackles. When the FSU program went through a transition of leadership, DeCalon Brooks stepped forward and took a leadership role in helping Uplifting Athletes remain a part of the Seminoles’ program. The Tampa native attended the 2019 Leadership Development Conference and was inspired by the rare disease cause and the programming to make something happen. This summer Florida State held a Lift For Life after a one-year absence on the calendar and Brooks, the President of the FSU Chapter, played an instrumental role in making the event to support the Rare Disease Community happen.

What is your most memorable experience as a college football player?

BROOKS: Getting my first sack against Louisville in 2018.

What drove you to get involved with Uplifting Athletes?

BROOKS: I wanted to join when I heard Uplifting Athlete helps fund research for diseases and it is a great way to serve the community and collaborate with different teams.

What have you learned from your experience with Uplifting Athletes?

BROOKS: I learned it is really bigger than football and that we can use our platform to better other people’s lives.

What advice would you share with someone in high school looking to play college football?

BROOKS: I would tell them if they didn’t play a down of football, what college would they go to? Because you are going to spend the next 3-4 years of your life at college. So you want to make sure that university will better you academically, athletically and as a man.

Who is your favorite NFL player and why?

BROOKS: Von Miller is one of my favorite players. He has a lot of passion for the game and it shows on the field.

DECALON ON THE HOT SEAT

What is your perfect pizza?

BROOKS: Pepperoni

All time favorite movie?

BROOKS: New Jack City

What is your go-to fast food restaurant?

BROOKS: Whataburger

Favorite sports team (any sport)?

BROOKS: In basketball it’s the Heat, and in football the Bucs

What is the most used app on your phone?

BROOKS: Snapchat

Notre Dame Chapter welcomes Rare Disease patients, siblings and caregivers to Uplifting Experience bowling event


An important part of the Notre Dame Chapter heritage is the annual bowling event the Fighting Irish started in 2014.

This past weekend the Notre Dame Chapter used its event at the Strikes & Spares Event Center in Mishawaka, Indiana to host an Uplifting Experience for rare disease patients, families and caregivers.

More than 100 people – the largest attendance in the six-year history of the ND Chapter bowling event – packed the lanes for two hours of fun and inspiration.

“This was way bigger than anything we’ve ever had. It has been awesome to see how this event has grown and the impact the patients and football players have on each other,” said Uplifting Athletes Executive Director Rob Long, who attended the event Sunday morning.

“More than 30 Notre Dame football players showed up and they did a phenomenal job. There were more than 70 patients, siblings and caregivers The bowling alley staff did a phenomenal job. This is a community business giving back by donating their facility to make this possible. We are so proud of what this Uplifting Experience has become.”

When the Notre Dame Chapter joined the Uplifting Athletes team six years ago the annual bowling event was primarily an awareness event for Uplifting Athletes and the Rare Disease Community. 

As more rare disease patients, families and caregivers started coming to the event, the impact of those relationships spawned a shift in the focus of this event from just awareness to all about making this a special day for rare disease patients, their families and caregivers.

“It was great to see how happy the kids were and how great the players were with the kids,” Long said. “A bowling event like this a perfect Uplifting Experience and benefits everybody involved.”

For Seattle Seahawks WR Malik Turner the rare disease cause is personal


Seattle Seahawks rookie wide receiver Malik Turner is passionate about the rare disease cause.

He took part in Lift For Life as a member of the Illinois Chapter of Uplifting Athletes. Turner also supported his cause by participating in the Uplifting Athletes Reps For Rare Diseases campaign for his NFL Pro Day.

It was during his Reps For Rare Diseases campaign that Turner made the connection that one of his University of Illinois classmates, Holt Erikson, was a rare disease patient. Once he learned more about Holt’s story, Turner felt a deeper connection to his friend.  The rare disease cause became personal.

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

MALIK 2

 

That deep and personal relationship moved Turner to do everything in his power to use his platform as an elite athlete to inspire the Rare Disease Community with hope.

And Turner was not going to let an injury derail his commitment to making a difference for the Rare Disease Community.

Two weeks prior to his Pro Day workout Turner suffered a fracture in his foot. That injury meant he would not be able to participate in the biggest workout of his life.

Turner felt compelled, though, to honor his commitment to the rare disease cause and on his Pro Day still participated in the bench press. With his friend Holt on his mind, Turner went out and beat his bench press goal by one repetition despite being injured.

MALIK 1When he made it to the NFL, Turner wanted to continue that deeply personal 1-on-1 relationship with those battling rare diseases.

Once Turner secured a spot on the Seahawks roster, he almost immediately started looking for ways to do even more to support his cause. Working together, Turner and Uplifting Athletes teamed up to host an Uplifting Experience for a rare disease patient family in the greater Seattle area.

Earlier this month Turner hosted ADNP patient Tony Sermone, his twin brother Rocco and Tony’s parents, Sandra and Rich at the Seattle Seahawks’ Virginia Mason Athletic Center for several hours.

They toured the Seahawks locker room, interacted with other Seattle players, worked out on the practice field together and Turner walked them through a day in the life of an NFL player.

It was during this experience that Turner was able to show his passion for the rare disease cause – unveiling the cleats he will wear for the NFL’s My Cause My Cleats campaign during this Sunday’s game at home against San Francisco.

MALIK FAMILY GAME

 

Above the Seattle skyline painted on the on the back of his right cleat, are the initials “T” and “S” in Tony’s honor. The initials “H” and “E” are on the back of left cleat above the block “I” University Illinois logo to honor Holt.

“I needed to be more aware of exactly what rare means and how it’s not funded and needs more attention. Connecting to Holt and Tony made me want to dig deeper,” Turner said. “I didn’t know whom I impacted and when I saw that … it impacted me.

“Those little things that are bigger than me and bigger than football is something that’s important to me.”

Turner has chosen the Rare Disease Community as his cause and is supporting Uplifting Athletes during the NFL My Cause My Cleats campaign.

He is asking you to support his cause by making a donation through his Tackle Rare Diseases campaign.

The proceeds raised by Turner’s My Cause My Cleats campaign supports the mission of Uplifting Athletes and its charitable programs: Rare Disease Awareness, Rare Disease Research, Uplifting Experiences and Uplifting Leaders.

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Special day on campus for Princeton-Penn rivalry game involves Rare Disease Community


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You could feel the electricity in the air Saturday on campus as the Princeton football team prepared to host rival Penn in the final game of the season.

The Tigers were on the cusp of an undefeated season and claiming the Ivy League championship.

Saturday was also a special day for the Rare Disease Community inside Princeton Stadium.

The leaders of the Uplifting Athletes chapters at each university picked this match-up to serve as a Rare Disease Awareness Game to show their ongoing support for the rare disease cause.

Players from each team wore Uplifting Athletes stickers on their helmets and pulled on blue #WeTackleRare wristbands in a show of unified support for the Rare Disease Community each chapter champions.

And with the help of Uplifting Athletes Executive Director Rob Long and Director Sports Impact Brett Brackett, the Masciantonio family from The For The Love Of Grace Foundation was able to attend their first college football game together.

It was a busy Saturday in Princeton, New Jersey.

Gianna Masciantonio is a 4-year-old rare disease patient who is diagnosed with a rare brain tumor. Her parents, Joe and Kristen, started the For The Love Of Grace Foundation in honor of their daughter.

“We wanted to help others in the same situation,” Kristen Masciantonio said. “We give 100 percent of what we raise to research and to help families. We don’t have any overhead. I mean, who can you not help other families, right?”

In between the first and second quarters Gianna, her older brother Dominic, Joe and Kristen and Uplifting Athletes staff were recognized on the field as an extension of the hard work Princeton and Penn football programs put forth to support the Rare Disease Community.

“People just don’t fully understand what families like ours and others like ours go through,” Kristen Masciantonio said. “This is an important part of the support we need to feel. Support is important.”

Princeton went on to beat Penn to complete their perfect season and hoist the trophy as Ivy League champions. On the field they are competitors, but off the field the Tigers and Quakers football student-athletes share a common bond of shining a spotlight on the Rare Disease Community.

Thank you to the athletic departments at Princeton and Penn for supporting the football student-athletes of each chapter to make this a special day that extends well beyond 60 minutes of football.

 

 

Penn and Princeton football programs team up to make 110th meeting between the rivals Saturday a Rare Disease Awareness Game


PENN PRINCETON RDAG 18 GRAPHICUplifting Athletes is proud to announce that the Princeton and Penn football programs have joined forces for their upcoming 2018 regular season finale to shine a spotlight on the Rare Disease Community.

The chapter leaders from each school, with the support of both universities, worked together to make the match-up between the Tigers and Quakers on Saturday, November 17 at Princeton Stadium an Uplifting Athletes Rare Disease Awareness Game.

Rare disease patients, caregivers and families will be in attendance at this traditional rivalry game, and will be hosted by each university to show their ongoing support of the rare disease cause.

Players from each team will have Uplifting Athletes stickers on their helmets and wear #WeTackleRare wrist bands in a show of unified support of the Rare Disease Community each chapter champions.

“In the competitive landscape of college football, Penn Princeton is one of the great rivalries,” Uplifting Athletes General Manager Brett Brackett said. “We were thrilled when our two chapter leaders agreed to put their on-field differences aside to share game day with local rare disease patients, and add another dimension that shows ongoing support for the entire Rare Disease Community.”

During one of the television timeouts during the game, rare disease patients, families and caregivers will be the honored on the field in recognition of the two programs coming together to support one cause.

During the month of October each school participated in the month-long Uplifting Athletes Touchdown Pledge Drive to support the Rare Disease Community. The chapter leaders of each school wanted to extend that opportunity to financially support their Touchdown Pledge Drive to include this rivalry game and make each touchdown scored matter more.

Thank you to the athletic departments at Princeton and Penn for supporting the football student-athlete leaders of each chapter by allowing them to recognize the Rare Disease Community as part of this game.