2021 Reps For Rare Diseases campaign sets records, displays the power of sports

Empowering NFL prospects to use their Combine or Pro Day performance as a platform to give back and inspire the Rare Disease Community is what drives Uplifting Athletes Reps For Rare Diseases.

2021 marks the seventh consecutive year these athletes have used their platform to raise funds for Uplifting Athletes and introduce their fans, friends and family to the rare disease cause.

With the NFL bypassing its annual Combine and relying solely on individual university Pro Days in order to evaluate prospects, there was an air of uncertainty how this campaign would unfold when it kicked off March 6th.

“Uplifting Athletes is a great organization and has strong ties to Syracuse University,” said 2021 Reps For Rare Diseases participant Nolan Cooney, a former rare disease patient who served as a leader for the Syracuse Chapter. “I’m doing Reps For Rare Diseases to not just raise funds, but to use my platform to bring attention to the Rare Disease Community.”

Reps For Rare Diseases enables 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.

As we hoped, people were engaged and moved by the power of sports. Fans shared rare disease stories, donors were inspired by the heart of the players using their platform to serve a greater good and the Rare Disease Community was exposed to an audience of nearly 14 million during the month-long campaign.

“This opportunity was brought to me by marketing guys as something I could consider doing. So I looked into Uplifting Athletes, and for me it was a no brainer,” said former Texas Tech defensive end Eli Howard. “There’s 1 in 10 Americans living with a rare disease and this is a great opportunity to use my platform to help those with the rare diseases. Pro Day is all about yourself to be honest, but this is a way to make it about others. I love that. For me, this is such a blessing to be able to do this.”

This year, 54 NFL prospects from a record 31 schools participated in Reps For Rare Diseases. Each used their social media to promote their participation in the campaign and nearly half of them received additional media coverage including television, online media, podcasts and newspapers to share the message about the rare disease cause.

Fans showed their appreciation by leaving personal messages of thanks, motivation and inspiration on each players’ individual campaign page. Some of the examples include: 

  • I appreciate your action for this program. A rare disease in my family makes for challenging times and treatment. Thank you; 
  • You have done wonderful and I am so proud of you. The charity you have chosen shows that you are a man of good character; 
  • Thank you for having the heart of a champion, both on the field and for those in need within this community.

The Rare Disease Community also made sure its voice was heard: 

  • There will never be the right words to thank you for doing this for the rare disease community. So let this donation say what I can’t; 
  • As a father to a son who has an ultra rare genetic disease, Caleb’s work to bring awareness to our community means the world to me.

Some even left heartfelt notes in memory of those who lost their battles with a rare disease: 

  • So proud of you Will…what a great charity. Would like to honor my mother- who passed from ALS; 
  • Keep up the great work. In Loving Memory of our Beautiful One, Sophia Grace Webster, sunrise 3-20-20, sunset 4-2-20.

The 2021 campaign set a record with more than $111,500 raised to support Uplifting Athletes and its commitment to create Uplifting Leaders, engage in Uplifting Experiences, fund Rare Disease Research, and expand Rare Disease Awareness.

A record 31 of the participants raised at least $1,000, more than doubling the previous high of 14.

“I’m really excited that I (had) the opportunity to help people who have rare diseases,” said former Oregon defensive back Brady Breeze, who finished Reps For Rare Diseases as the No. 1 overall fundraiser with $6,065. “There’s a lot of people who have reached out to me and thanked me for doing it. They’re rare diseases for a reason. People don’t know they exist until they get a note from the doctor. I really want to help those people out that have diseases that aren’t recognized as much. I just want to help in any way I can.”

Horizon Therapeutics plc and Uplifting Athletes worked together for the second year in a row as Reps For Rare Diseases teammates. Horizon matched all donations up to $35,000 through its #RAREis program, which is dedicated to providing individuals living with a rare disease and families access to resources that connect, inform and educate as they navigate their daily lives.

“The guys that run (the Uplifting Athletes Chapter) for us at Northwestern are a couple of special dudes and put a lot of time and effort into this,” former Wildcats quarterback Peyton Ramsey said. “We all decided we needed to do our part and do this for a very good cause.. I’m grateful to all the fans who donated to support us.”

Chapter Update: Honoring FBS senior chapter leaders and three teams post Week 14 victories

As the 2020 college football season winds down, Uplifting Athletes would like to honor the contribution of nine veteran FBS chapter leaders in service to the Rare Disease Community.

Thank you to Nolan Cooney of Syracuse, Thomas Ruocchio and Dylan Autenrieth of NC State, Michael Marchese of Illinois, Will Spiers of Clemson, Jack DeFoor of Georgia Tech, Joe Spivak of Northwestern, Brock Wright of Notre Dame and Jake Funk of Maryland for inspiring the Rare Disease Community with hope.

Best wishes to each of you in the next step of your journey. You will always be a part of the Uplifting Athletes family.


Northwestern: For the sixth consecutive year, the Wildcats claimed the Land of Lincoln Trophy over rival and fellow chapter school Illinois. Northwestern amassed more than 400 yards on the ground for the first time since 2003. Running backs Evan Hull and Cam Porter combined for 291 of those yards and three touchdowns. Northwestern Chapter leader, defensive lineman Joe Spivak, had three tackles. Illinois Chapter leader, linebacker Michael Marchese, had three solo tackles and a pass break-up. The Wildcats are champions of the Big Ten West for the second time in three years and will play Ohio State Saturday in the Big Ten Championship game.

Penn State: A monster second half propelled the Nittany Lions past Michigan State for their third win in a row. Penn State outscored the Spartans 29-3 in the second half on Senior Day. Quarterback Sean Clifford threw a pair of second-half touchdown passes to Parker Washington, and Jahan Dotson returned a punt 81 yards for a score. Dotson became the third Big Ten player since 2000 to record 100 receiving yards and return a punt for a touchdown in the same game, joining Michigan’s Steve Breaston (2006) and Wisconsin’s Brandon Williams (2005). Clifford, former Penn State Chapter President, finished with 280 total yards (232 passing, 48 rushing) and accounted for three touchdowns.

Florida State: Quarterback Jordan Travis sparked a ground game that churned out more than 300 yards and accounted for six touchdowns in the victory over Duke. The redshirt sophomore rushed for 90 yards, setting FSU’s single-season record for rushing yards by a quarterback with 559 – surpassing the 504 by Charlie Ward in 1992. Florida State Chapter President, linebacker DeCalon Brooks, finished with three tackles.

Round-Up: The final play of the key Western Michigan game at Ball State saw the Broncos score an apparent game winning touchdown after a wild series of laterals only to see an illegal forward pass negate the play. The Broncos outgained the Cardinals 491-352 and led by 14 heading into the fourth quarter. … Maryland Chapter leader, running back Jake Funk, had 180 yards on only 17 carries with a touchdown before leaving the game with an injury in an overtime setback to Rutgers. It was the first time in his career where Funk scored a touchdown and the Terrapins didn’t claim victory. … The Georgia Tech defense kept the Yellow Jackets in the game against Pitt, limiting the Panthers to only one touchdown in six trips inside the red zone. Pitt’s ground game allowed the Panthers to keep the ball away from the Tech offense in the victory, by running up more than 300 rushing yards and nearly 40 minutes in time of possession. … Baylor took the field against Top 25 ranked Oklahoma State shorthanded because of COVID-19. The Bears were missing 47 players, coaches and support staff in the loss to the Cowboys.

Each week during the college football season we will feature a player who is an officer for an Uplifting Athletes Chapter. This week we feature Stony Brook offensive lineman and Chapter Vice President Kyle Nunez.

Chapter Update: Baylor rallies to win in dramatic fashion and six other teams record Week 12 victories

Baylor snapped its five-game slide in dramatic fashion, using a 30-yard John Mayers field goal as time expired to come from behind and beat Kansas State by a point.

The Bears twice overcame nine-point, fourth-quarter deficits and scored the final 10 points, including driving 57 yards in 10 plays to set up the winning kick. QB Charlie Brewer, who was 4-for-4 on the final drive, finished with 405 total yards and two touchdowns each passing and rushing.

Penn State: A season-high 254 yards on the ground powered Penn State to its first victory in 2020 with a win on the road at Michigan. The Nittany Lions’ last victory in Ann Arbor was 2009. True freshman RB Keyvonne Lee had a career-high 134 yards to pace the offense. Former Penn State Chapter President, quarterback Sean Clifford, chipped in 226 total yards including a 29-yard touchdown scamper. The Nittany Lions defense limited Michigan to fewer than 300 total yards and held the Wolverines to a paltry 5-for-15 on third and fourth down conversions. 

Notre Dame: The No. 2 ranked Fighting Irish scored the final 14 points to pull away from North Carolina down the stretch and post their 15th consecutive victory. Notre Dame’s defense held a Tar Heels offense that came in averaging more than 43 points a game to a season-low 17 points and fewer than 300 total yards. RB Kyren Williams had the second three-touchdown game of his career. Notre Dame Chapter President, linebacker Drew White, finished with five tackles including a pair of tackles for a loss and a half-sack. 

Clemson: The No. 3 ranked Tigers saw the return of starting quarterback Trevor Lawrence after a two-game absence and Clemson proceeded to score a school-record 31 points in the first quarter against Pitt. Lawrence finished with 403 passing yards and a pair of touchdowns. The Tigers’ defense hauled in five turnovers including three interceptions in the first nine Pitt pass attempts. Wide receiver Cornell Powell, had six catches for 176 yards and a touchdown to become only the third Tiger wide receiver to finish with 150 or more receiving yards in back-to-back games and the first since Sammy Watkins in 2013.

Georgia Tech: The Yellow Jackets amassed more than 375 yards on the ground and freshman quarterback Jeff Sims threw three touchdown passes to pull away from Duke in their 88th meeting. The Yellow Jackets defense forced five turnovers and Tech scored the final 21 points to pull away. Georgia Tech Chapter leaders, offensive linemen Jack DeFoor and Zach Quinney, started at left guard and left tackle, respectively.

NC State: Powered by a career-high 313 yards and four touchdowns from quarterback Bailey Hockman, the Wolfpack won their third in a row by coming from behind to nudge past fellow chapter school Syracuse. NC State scored the final 16 points after falling behind 29-20 late in the third quarter. Former Syracuse Chapter leader, punter Nolan Cooney, averaged 43.1 yards on seven punts and was named the Orange team captain for the game.

Western Michigan: The Broncos rallied for 10 points in the final 9:12 to stay unbeaten with a victory over Northern Illinois. Wide receiver D’Wayne Eskridge had 285 all-purpose yards including the eighth 100-yard kickoff return for a touchdown in program history. WMU’s defense had five sacks, 13 tackles for a loss and six pass break-ups. Western Michigan Chapter Vice President, safety Jake Moertl, had a solo tackle for the Broncos.

Round-Up: For the second time this season Northwestern overcame a 17-point deficit, only this time the Wildcats couldn’t hold on in the fourth quarter as Michigan State scored the final 12 points to hand the Wildcats their first loss of the season. Northwestern Chapter Vice President, defensive lineman Joe Spivak, finished with three tackles. … Maryland wide receiver Dontay Demus Jr. tallied his fourth career 100-yard receiving game and second of the season, posting six receptions for 114 yards including a 43-yard touchdown catch in the loss to No. 11 Indiana. This is the fifth-straight game Demus posted at least four receptions, becoming the first Terp to accomplish that feat since Stefon Diggs in 2014. … Kent State suffered its first loss of the season against a Buffalo team that saw running back Jare Patterson rush for 409 yards and eight touchdowns. Kent State Chapter President, wide receiver Isaac Vance, had six catches for 45 yards.

Each week during the college football season we will feature a player who is an officer for an Uplifting Athletes Chapter. This week we feature Kent State receiver/returner and Chapter President Isaac Vance.

Chapter Update: Notre Dame claims a thriller over No. 1 Clemson in double OT and four other chapter schools notch Week 9 victories

For the ninth time in program history Notre Dame knocked off the No. 1 team in the country with a thrilling double overtime victory over fellow chapter school Clemson. Notre Dame extended its active win streak to 13 games, the most of any FBS school, and ended Clemson’s 36-game regular-season winning streak.

Running back Kyren Williams paced Notre Dame with 140 yards on the ground and three touchdowns including both Fighting Irish scores in overtime. Linebacker Jeremiah Owusu-Koramoah returned a Clemson fumble 23 yards for a touchdown in the second quarter for the first touchdown this season by the Notre Dame defense.

Fighting Irish kicker Jonathan Doerer set a Notre Dame program record, accounting for 18 kicking points including four field goals. Clemson freshman quarterback D.J. Uiagalelei threw for 439 yards, the third-most yards in school history and the most ever by a freshman surpassing Deshaun Watson’s 435 against North Carolina in 2014. His total was also the most passing yards ever by an opposing quarterback against Notre Dame, surpassing the 425 yards by USC’s Carson Palmer in 2002.

Notre Dame Chapter President, linebacker Drew White, tied for the team lead in tackles with nine and also had a tackle for a loss. 

Maryland: The Terrapins put up the most points ever in their 44-game history with Penn State by scoring 35 to post Maryland’s first victory over the Nittany Lions since 2014. Terps Sophomore quarterback Taulia Tagovailoa threw for 282 yards and three touchdowns after throwing for nearly 400 a week ago. Tagovailoa posted the most passing yards by a quarterback (676) in back-to-back wins since Scott Milanovich threw for 692 yards in back-to-back games in 1994. Maryland Chapter President, running back Jake Funk, led the Terrapins with 80 rushing yards and scored on a 38-yard run early in the second quarter. Former Penn State Chapter President, quarterback Sean Clifford, established a program record with 57 pass attempts and recorded the third 300-yard game of his career. Penn State wide receiver Jahan Dotson is the first player to have a touchdown catch in each of his first three games since Allen Robinson in 2012, and Dotson’s five touchdowns in the first three games of the season equals the Penn State record set by Joe Jurevicius in 1997.

Northwestern: For the third game in a row the Wildcats defense kept the opposition off the scoreboard in the second half in a win over Nebraska. Senior linebacker Paddy Fisher, Blake Gallagher and Chris Bergin all had double-digit tackles for the second game in a row. Northwestern is 3-0 for the first time since 2015 and the last time it started with three straight Big Ten wins was 2000. Northwestern Chapter Vice President, defensive tackle Joe Spivak, made his second consecutive start and registered one tackle. Wildcats redshirt freshman safety Brandon Joseph, S, Northwestern: The redshirt freshman notched his third interception of the season in the second quarter against Nebraska to become the first Big Ten player since 2016 to record three interceptions through three games and became the first Wildcats freshman with picks in back-to-back games since 2003.

Western Michigan: The Broncos rolled up 50-plus points in their season opener on the road behind 262 passing yards and a career-best three touchdown passes from quarterback Kaleb Eleby. Western Michigan Chapter Vice President, junior safety Jake Moertl, had a pair of tackles for the Broncos.

Kent State: The Golden Flashes used a game-winning touchdown pass from Dustin Crum to Mark Williams with 7:31 left to post a victory in their season opener. Kent State’s win was its fifth in a row dating back to last season and marks the longest winning streak since 2012. Kent State Chapter President, wide receiver Isaac Vance, had three catches for 19 yards.

Round-Up: NC State took a 10-point lead into the fourth quarter but couldn’t hold off No. 11 Miami at home. Wolfpack sophomore Zonovan Knight tied the school record for the longest play in school history with a 100-yard kickoff return late in the third quarter.  Knight joined four others in the record book. … Illinois fell to 0-3 despite a career-best 63-yard touchdown run by RB Mike Epstein. … Baylor used three first-half interceptions to surge in front of No. 17 ranked Iowa State 21-10 at intermission, but couldn’t hold on, surrendering 28 unanswered points to the Cyclones in a back-and-forth affair that came down to the wire. … Syracuse played one of its best defensive games of the season in a tight game with Boston College at home. … Florida State started fast with a pair of first-quarter touchdowns but couldn’t sustain that early momentum against Pittsburgh. Florida State Chapter Vice President, wide receiver Keyshawn Helton, had three catches for the Seminoles.

Each week during the college football season we will feature a player who is an officer for an Uplifting Athletes Chapter. This week we feature Syracuse long snapper and Chapter President Aaron Bolinsky.

Chapter Update: Maryland rallies for historical victory and three other teams post Week 8 wins

Maryland rallied to record its most improbable victory in program history by coming from 17 points down in the fourth quarter to edge Minnesota at home in overtime. Before the Terrapins’ one-point victory over the Golden Gophers, Maryland was 0-71 overall when trailing by 17 points or more in the fourth quarter.

Sophomore quarterback Taulia Tagovailoa became the third player in Big Ten history in the last 20 years to finish a game with 350 passing yards, three passing touchdowns and two rushing scores, joining Dwayne Haskins of Ohio State in 2018 and Zak Kustok of Northwestern in 2001. His 394 passing yards are the most by a Maryland quarterback since 2010 and ranks 10th in the Terps’ single-game history.

Maryland Chapter President, running back Jake Funk, had a career day. The senior, who lost his 2018 and 2019 seasons to ACL tears in his left knee, posted career highs in carries (21) and rushing yards (221). It was the first time in program history that Maryland had a 300-yard passer (Tagovailoa) and a 200-yard rusher (Funk) in the same game.

Notre Dame: Powered by a defense that totaled 14 stops behind the line of scrimmage and limited fellow chapter school Georgia Tech to less than 250 total yards, the No. 4 ranked Fighting Irish ran their winning streak to 12 games, the longest active streak in FBS. Defensive end Daelin Hayes was all over the field, recording five tackles, two sacks, two forced fumbles and a pair of tackles for a loss. A bright spot for Georgia Tech was when redshirt sophomore cornerback Zamari Walton scooped up a Notre Dame fumble and returned it 93 yards in the second quarter to establish a school record. Walton’s return, the first fumble recovery of his career, surpassed the previous record of 90 yards by Kofi Smith in 1998. Notre Dame Chapter President, linebacker Drew White, had four tackles including a tackle for a loss. Georgia Tech Chapter leaders, offensive lineman Jack DeFoor and Zach Quinney, started at left guard and left tackle, respectively.

Clemson: Playing without Heisman Trophy candidate QB Trevor Lawrence, the No. 1 ranked Tigers scored 24 unanswered points to overcome a 15-point halftime deficit at home against Boston College. Freshman D.J. Uiagalelei replaced Lawrence under center and threw for 342 yards and a pair of touchdowns. Clemson Chapter Vice President, punter Will Spiers, averaged 48.0 yards on three punts including a 60-yard bomb. Chapter President, long snapper Jack Maddox, handled all the long snap duties for the Tigers.

Northwestern: The Wildcats erased a 17-point first-quarter deficit and rode a strong defensive effort to nurse a one-point lead entering the fourth quarter across the finish line to improve to 2-0. Northwestern’s linebacker trio of Paddy Fisher, Chris Bergin and Blake Gallagher each recorded double-digit tackles, including a career-high 12 from Bergin. Northwestern Chapter Vice President, defensive lineman Joe Spivak, made his first start in his 29th career game appearance. He finished with two tackles.

Round-Up: Penn State dropped to 0-2 after falling behind early before seeing a second-half rally against Ohio State fall short. Nittany Lions WR Jahan Dotson had a career night with eight catches, 144 yards and three touchdowns. Former Penn State Chapter President, quarterback Sean Clifford, had 252 of his 281 passing yards in the second half. … Illinois trailed by 21 points late in the third quarter, rallied for 14 unanswered points before turning the ball over on downs trying to complete its comeback against Purdue. Illinois Chapter President, offensive lineman Alex Palczewski, made his 38th straight start. … Baylor fell behind TCU 30-0 before the game was 21 minutes old, but staged a furious second-half rally that fell short. Bears tight end Ben Sims had a pair of touchdown catches becoming the first Baylor TE with a pair of TD catches in a game since Justin Akers in 2008. … Syracuse was overpowered by a red-hot Wake Forest team that posted its fourth win in a row. The Orange were also hampered by giveaways and lost the turnover battle 3-0. Former Syracuse Chapter leader, punter Nolan Cooney, averaged 42.4 yards on seven punts with three inside the 20-yard-line and three more that covered 50-plus yards. … The Middle Atlantic Conference (MAC) returns to action Wednesday with chapter schools Kent State and Western Michigan each scheduled to play.

Each week during the college football season we will feature a player who is an officer for an Uplifting Athletes Chapter. This week we feature Saint Francis lineman and Chapter President Shaun Hastings.

Chapter Update: Northwestern opens season with a bang and two other teams pick up Week 7 victories

Northwestern head coach Pat Fitzgerald earned his 100th victory as the Wildcats’ skipper behind a balanced offense led by Indiana transfer Peyton Ramsey and a defense that surrendered only a first-quarter field goal to fellow chapter school Maryland.

The 40-point margin of victory is the ‘Cats’ largest against a Big Ten opponent since 1970 when Northwestern beat Illinois 48-0. Ramsey accounted for 259 total yards (212 passing, 47 rushing) and two touchdowns. He completed 23 passes, the most completions by a Northwestern quarterback in his first start since Gavin Hoffman in 1999.

Maryland Chapter leader, running back Jake Funk, led the Terrapins with 35 rushing yards on six carries and added nine more yards receiving on a pair of receptions. Northwestern Chapter Vice President, defensive lineman Joe Spivak, finished with one tackle on defense and also lined up on offense at fullback on the goal line.

Notre Dame: For the first time since 2012 the No. 3 ranked Fighting Irish held back-to-back opponents to fewer than 10 points with a road victory at Pittsburgh. Quarterback Ian Book finished with 312 yards passing and a pair of touchdowns, while the Irish defense limited the Panthers to a first-quarter field goal and only 162 yards of total offense. With a three-yard run early in the second quarter, Book became just the second quarterback in Notre Dame history to eclipse the 8,000 total offensive yards plateau in his career – joining Brady Quinn ‘07 (11,944). Notre Dame Chapter President, linebacker Drew White, finished with two tackles and was in on a tackle for a loss as well.

Clemson: The top-ranked Tigers were in a tight spot with fellow chapter school Syracuse at home before Clemson’s defense took control with a momentum-swinging strip-sack in the third quarter that was returned for a touchdown by Andrew Booth, Jr. Clemson Chapter President, punter Will Spiers, not only celebrated his 23rd birthday on game day but averaged 53.6 yards on five punts, including four of 50 yards or more. It was his third straight game with a punting average of 50.0 yards or more, a career-long streak. He tied his career long with a 64-yard bomb in the first quarter. Spiers also converted a fourth-and-3 on a fake punt with a six-yard rush in the second quarter. It was his third career first down on a fake punt but his first via a rush. Syracuse Chapter President, long snapper Aaron Bolinsky, handled all the Orange long snap duties.

Penn State: The Nittany Lions rallied to take an eight-point lead late in regulation before Indiana tied it late in regulation and won it in the first overtime by narrowly scoring on a two-point conversion by quarterback Michael Penix, Jr. Former Penn State Chapter President, quarterback Sean Clifford, accounted for 357 yards of total offense (238 passing, 119 rushing) and four touchdowns.

Round-Up: NC State struggled in its first game without their regular starting quarterback, Devin Leary who is out for the season. The Wolfpack fell behind North Carolina on the road 17-7 at halftime before the Tar Heels ripped off 21 unanswered points to start the second half. … Playing for the first time in three weeks because of pandemic issues, Baylor saw its offense show plenty of rust for three quarters before finding its way in the fourth quarter at Texas. The Bears had nearly half of their 316 yards in the fourth quarter and scored twice. … Illinois Chapter President, offensive lineman Alex Palczewski, started his 37th consecutive game for the Fighting Illini in a road loss to Wisconsin. … Florida State saw Louisville score on its first five possessions to fall behind 31-14 at halftime and never recovered. … Georgia Tech turned it over early and fell behind 24-0 at Boston College. The Yellow Jackets were outgained by only 47 total yards, but lost the turnover battle 3-0 and had 10 penalties.

Each week during the college football season we will feature a player who is an officer for an Uplifting Athletes Chapter. This week we feature Maryland running back and Chapter President Jake Funk.

Beyond The Trophy 2020: Get to know Maryland Chapter President and running back Jake Funk

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: Jake Funk

College: University of Maryland

Height, weight, class, position: 5-10, 203 pounds, redshirt senior, running back

High School: Damascus High School in Gaithersburg, Maryland

About Jake: The three-time Academic All-Big Ten selection and former Maryland Gatorade High School Player of the Year made an immediate impact for the Terrapins by appearing in 25 games his first two seasons before battling injuries the last two years. In 2019 he had more than 200 yards and a couple touchdowns through three games before an ACL injury again brought his season to an end. Owns a stellar 6.1 yards per carry average for his career with seven touchdowns. He became a Maryland Chapter leader serving the Rare Disease Community in 2019 and attended the Uplifting Athletes 2020 Leadership Development Conference.

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

FUNK: Scoring the game winning touchdown to beat Texas at Texas.

What drove you to get involved with Uplifting Athletes?

FUNK: Former teammates of mine emphasized the importance of Uplifting Athletes to me. I also really enjoy helping others especially when individuals are less fortunate than others like kids with rare diseases.

What have you learned from your experience with Uplifting Athletes?

FUNK: I did not know how underfunded rare diseases actually are. 

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

FUNK: Make sure you take advantage of every second because it all goes by so fast.

Who is your favorite NFL player and why?

FUNK: Carolina Panthers running back Christian McCaffery because I aspire to have the skill set at RB that he does. 

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

FUNK: Connor McGregor because he is the definition of sports entertainment. 

JAKE ON THE HOT SEAT

What is your perfect pizza?

FUNK: Pepperoni

All time favorite movie?

FUNK: Lion King

What is your go-to fast food restaurant?

FUNK: Chipotle

Favorite sports team (any sport)?

FUNK: Washington Capitals

What is the most used app on your phone?

FUNK: Snapchat

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.