Why support rare now?


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

Uplifting Athletes cancels all annual Lift For Life events for 2020


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

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

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

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

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

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.

2019 Reps For Rare Diseases campaign set new standards across the board


During a pivotal time in their football lives, more than 50 NFL prospects used their first opportunities as professional athletes to give back.

The Uplifting Athletes 2019 Reps For Rare Diseases showcased these athletes in a month-long campaign that kicked off in late February with the NFL Combine and ran through March with individual NFL Pro Day workouts.

This year Reps For Rare Diseases set a new standard in terms of the number of athletes participating, the funds raised and awareness generated to shine a spotlight on the Rare Disease Community.

It was an honor to work with 56 outstanding athletes from 21 college football programs across the country.  The 2019 Reps For Rare Diseases campaign produced an overall audience of more than 10 million through social media and online news and raised nearly $45,000 to support the rare disease cause.

“Each one of our 2019 Reps For Rare Diseases participants stands out amongst their peers and really understands the position they are in to make a difference,” Uplifting Athletes Director of Sports Impact and NFL veteran Brett Brackett said. “It’s refreshing to work with people that, in the midst of the biggest job interview of their lives, will take the time to think about how they can help someone else.

“Many thanks to all of our participants for helping those affected by rare diseases. I’m proud to work for an organization that makes it easy for athletes to use their platform to make a positive impact on the community.”

With the Rare Disease Community on their hearts and driving them to train harder, the 2019 Reps For Rare Diseases team performed at a very high level including a record 14 athletes exceeding their $1,000 fundraising goal.

Ryan Bates, Trace McSorley and Koa Farmer from Penn State, Nick Allegretti of Illinois, Western Michigan’s Jamauri Bogan, Michigan State’s Jon Reschke, Dom Bragalone from Lehigh, Chris Myarick of Temple, Notre Dame’s Drue Tranquill, Jake Collins and Blake Hance from Northwestern, Eric Dungey of Syracuse, Georgia Tech’s Will Bryan and Charlie Volker from Princeton all raised more than $1,000 each.

The proceeds from 2019 Reps For Rare Diseases support the mission of Uplifting Athletes and its charitable programs: Rare Disease Awareness, Rare Disease Research, Uplifting Experiences and Uplifting Leaders.

This was the fifth consecutive year Uplifting Athletes empowered NFL prospects with the opportunity to use their platform to raise funds and awareness in support of the Rare Disease Community.

The first Reps For Rare Diseases campaign in 2015 was run by former Penn State and current Detroit Lions tight end Jesse James.

“Uplifting Athletes prides itself in helping athletes realize their potential to make a positive impact on the Rare Disease Community,” Brackett said. “Our Reps for Rare Diseases campaign is another unique example of this.”

44 NFL prospects join 2019 Reps For Rare Diseases campaign for NFL Pro Day workouts


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

The Reps For Rare Diseases Campaign is one of the first opportunities for these athletes to create an impact using their platform as professional athletes. Uplifting Athletes is excited to work with these outstanding individuals to help them give back during this very pivotal time of their lives.

This year Uplifting Athletes currently has 44 players who chose to participate in Reps For Rare Diseases 2019 as part of their NFL Pro Day workout.

“We would like to thank all the athletes participating in Reps For Rare Diseases and wish all of our participants the best of luck in the pursuit of their professional careers,” Uplifting Athletes Director of Sports Impact and NFL veteran Brett Brackett said. “We believe this is a special group that stands out for the right reasons amongst their peers. Any NFL team would be lucky to have one of these men representing their organization.”

The Uplifting Athletes 2019 Reps For Rare Diseases Pro Day Team is comprised from 18 different college football programs.

Clayton Thorson, Flynn Nagel, Jake Collins, Blake Hance, Jordan Thompson, Jared McGee and Tommy Doles all hail from Northwestern. Representing NC State are A.J. Cole, Terronne Prescod, Steph Louis and Reggie Gallaspy, Jr. From Penn State its Koa Farmer, Nick Scott, Kyle Vasey and Jake Cooper. And Tyler Newsome, Miles Boykin, Julian Love, Sam Mustipher, Nic Weishar and Justin Yoon from Notre Dame.

The quartet from Princeton includes John Lovett, Cody Smith, Steve Carlson and Charlie Volker. Maryland has Brendan Moore and Ty Johnson. Representing Georgia Tech are Kyle Cerge-Henderson and Andrew Marshall, while Eric Dungey and Kielan Whitner come from Syracuse.

Alec Eberle and Derrick Kelly II come out of Florida State and Antonio Jackson and Lawrence Menyah played for Fordham.

Other schools representatives include: Nick Allegretti from Illinois, Clemson’s Milan Richard, Chris Myarick of Temple, Jon Reschke from Michigan State, Nick Giorgio of Springfield, Kansas’ Mavin Saunders, Jamauri Bogan of Western Michigan and Craig Reynolds from Kutztown.

Fans and supporters can become teammates of any one of our NFL Pro Day participants this year and help Uplifting Athletes Tackle Rare Diseases by simply making a pledge for every bench press repetition or each vertical/broad jump inch the player achieves.

Visit the Uplifting Athletes Reps For Rare Diseases 2019 team landing page, choose your favorite player and make your pledge today.

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

The first Reps For Rare Diseases campaign was run by former Penn State and current Detroit Lions tight end Jesse James.

Since James launched this program in 2015 other current NFL veterans such as Justin Watson (Tampa Bay Buccaneers), Jason Cabinda (Oakland Raiders), Justin Jackson (San Diego Chargers), Mike McGlinchey (San Francisco 49ers), Mike Gesicki (Miami Dolphins), Josh Adams (Philadelphia Eagles), Malik Turner (Seattle Seahawks), Grant Haley (New York Giants), Anthony Zettel (Cleveland Browns), Andrew Billings (Cincinnati Bengals), Garrett Sickels (Los Angeles Rams), and Chad Kanoff (Arizona Cardinals) have used Reps For Rare Diseases as a platform to support the Rare Disease Community.

“Uplifting Athletes prides itself in helping athletes realize their potential to make a positive impact on the Rare Disease Community. Our Reps for Rare Diseases campaign is another unique example of this,” Brackett said.

Legacy Chapters are part of the history and heritage of Uplifting Athletes


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Uplifting Athletes network of chapters are run by college football student-athletes. Each year, there is a transition in leadership and occasionally chapters cease being active during these transitions.

We identify those Chapters that are no longer active as Uplifting Athletes Legacy Chapters. They are a part of our history, heritage and who we are today, but they are no longer active.

Each Legacy Chapter, at some point since the inception of Uplifting Athletes in 2007, was moved to inspire the Rare Disease Community with hope and was part of our active chapter network.

We would like to thank all the individuals and universities who served as part of our Legacy Chapters. They all helped serve the 30 million Americans who comprise the Rare Disease Community well.

If any college football student-athletes are interested in transitioning this Legacy Chapter back to active chapter status, please contact Uplifting Athletes Director, Sports Impact Brett Brackett at brett.brackett@upliftingathletes.org.