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: Aaron Bolinsky
College: Syracuse University
Height, weight, class, position: 5-11, 218 pounds, junior, long snapper
High School: North Schuylkill High School in Frackville, Pennsylvania
About Aaron: The Pennsylvania native battled a rare disease as a child and is passionate about serving the Rare Disease Community. Aaron participated in the 2018 and 2019 Lift For Life events and stepped into a leadership role for the Syracuse Chapter during the offseason and attended the 2020 Leadership Development Conference. An injury to the starting long snapper his freshman season in 2018 gave Aaron the opportunity to make an impact on the field on special teams. He has made 19 consecutive starts as the Orange long snapper, recorded six tackles and a forced fumble. He is projected as the No. 1 long snapper in 2020.
What is your most memorable experience as a college football player?
BOLINSKY: Being able to play against Notre Dame at Yankee Stadium.
What drove you to get involved with Uplifting Athletes?
BOLINSKY: As a kid who once had a rare disease, along with the passion I have for giving back to my community, I wanted to find more ways to help inspire kids to keep fighting.
What have you learned from your experience with Uplifting Athletes?
BOLINSKY: That the smallest thing can make such a big impact on the people who look up to you.
What advice would you share with someone in high school looking to play college football?
BOLINSKY: You may lose friends and people may say things about you, but if playing college football is your goal don’t stop or let anyone throw you off track in achieving that goal.
Who is your favorite NFL player and why?
BOLINSKY: Former Indianapolis Colts and Denver Broncos quarterback Peyton Manning. He has been very humble and grounded his whole life and loved how he was such a big student of the game.
If you could have lunch with any one person (dead or alive), who would you choose and why?
BOLINSKY: Warren Buffet. As a business major to be able to sit down talk to him would be an awesome opportunity.
AARON ON THE HOT SEAT
What is your perfect pizza?
BOLINSKY: Chicken Parmesan
All time favorite movie?
What is your go-to fast food restaurant?
Favorite sports team (any sport)?
BOLINSKY: Philadelphia Eagles
What is the most used app on your phone?BOLINSKY: Instagram
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.
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.
For the first time in more than a half century an unranked Florida State team beat a top-five ranked team in Doak Campbell Stadium with a narrow victory over North Carolina. The last time it happened was October 16, 1965 when the Seminoles recorded a 10-3 win over No. 5 Georgia.
The upset provided Mike Norvell his first ACC victory as the Florida State head coach. The Seminoles’ last victory over a top-five team came in 2014 when they edged Notre Dame.
Quarterback Jordan Travis completed only eight passes, but finished with 191 yards through the air to average nearly 24 yard per completion. He also rushed 16 times for 107 yards and a pair of touchdowns. Florida State also blocked a pair of punts in the first quarter and now leads the nation in blocked kicks with five.
Florida State Chapter President, linebacker DeCalon Brooks, scooped up a blocked punt on the first drive of the game and returned it 18 yards to set up FSU’s first touchdown. Fellow FSU Chapter Leader, wide receiver Keyshawn Helton, had two catches for 43 yards.
Clemson: The Tigers scored a school record 52 points in the first half to extend its road winning streak to 14 games with a victory over fellow Uplifting Athletes Chapter Georgia Tech. The previous mark for points in a half was 49 against Wake Forest in 1981. Clemson quarterback Trevor Lawrence became only the second quarterback in school history to throw for 400 yards and five touchdowns in a road game. Lawrence joins Tajh Boyd, who did it twice – once in 2012 and another time in 2013. Clemson Chapter President, punter Will Spiers, averaged 50.7 yards on three punts. The senior also made a late cameo appearance at quarterback for the Tigers, completing 2 of 3 passes for 13 yards.
Notre Dame: Sophomore running back Kyren Williams posted his third consecutive 100-yard game to help the No. 4 ranked Fighting Irish edge Louisville to remain unbeaten. Williams finished with 127 yards on 25 carries. Louisville came into this contest averaging nearly 425 yards a game offensively, but an Irish defense that surrendered fewer than 12 points a game on average held the Cardinals to a season-low 219 yards and seven points. Notre Dame Chapter President, linebacker Drew White, finished with three tackles including a tackle for a loss.
NC State: The Wolfpack trailed by six at halftime, but used a strong defensive effort in the second half to roll past Duke at home. NC State outscored the Blue Devils 17-0 in the second half. Redshirt sophomore linebacker Payton Wilson had a pair of interceptions to become the first Wolfpack linebacker with a pair of interceptions in the same contest since Jerod Fernanez picked off No. 1 ranked Florida State twice in the 2014 matchup. Wilson also finished with a team-high 19 tackles in the victory over Duke, the most tackles for a Pack player since Earl Wolff had 19 vs. Clemson in 2012.
Syracuse: Back-up quarterback Rex Culpepper, playing in place of injured starter Tommy DeVito, threw three touchdown passes and running back Sean Tucker notched his second 100-yard game of the season in a home loss to Liberty. Former Syracuse Chapter Leader, punter Nolan Cooney, averaged 46.5 yards per punt and he dropped all six of his punts inside the 20-yard line.
Playing for the first time in three weeks, No. 5 ranked Notre Dame used a balanced offensive attack to push past Florida State in a match-up of Uplifting Athletes chapter schools.
Sophomore running back Kyren Williams went for 185 yards and two touchdowns on 19 carries and freshman Chris Tyree kicked in 103 on 11 carries with a touchdown. Combined the duo averaged 9.6 yards per carry. Wide receiver Javon McKinley also had a 100-yard day, catching five passes for 107 yards. The last time Notre Dame had a pair of 100-yard rushers and a 100-yard receiver in a single game was 2015 against Stanford.
Florida State fell behind 14-3 early but counter punched the entire game, grabbing a 17-14 lead late in the first quarter. Seminoles quarterback Jordan Travis had 300 total yards in his first start (204 passing, 96 rushing) with a pair of touchdowns.
Notre Dame Chapter leaders, linebackers Drew White and JD Bertrand, each had three tackles for the Fighting Irish. Former chapter leader, tight end Brock Wright, had two catches for 10 yards.
Clemson: The No. 1 ranked Tigers extended their home winning streak to 25 in handing No. 13 Miami its first loss of the season. RB Travis Etienne had 222 total yards (149 rushing, 73 receiving) and scored a pair of rushing touchdowns. Etienne extended his school record for 100-yard rushing games to 19 and became the first non-kicker in ACC history to score 400 points. QB Trevor Lawrence added 292 yards passing with three touchdowns and the Clemson defense produced three interceptions and five sacks. Clemson Chapter President Will Spiers punted only three times but averaged a stellar 52.7 yards per kick and Vice President Jack Maddox handled all the long snapper duties for the Tigers.
Georgia Tech: After falling behind 21-7 late in the second quarter Friday night at Bobby Dodd Stadium, the Yellow Jackets went on a tear and overwhelmed Louisville to even their record at 2-2. Wide receiver Ahmarean Brown’s touchdown pass in the final minute ignited the comeback. Brown’s nine-yard toss to Jalen Camp was the first touchdown pass by a Georgia Tech wide receiver since 2003. The Yellow Jackets outscored the Cardinals 32-6 in the second half. Georgia Tech Chapter leaders Jake DeFoor and Zach Quinney started at left guard and left tackle, respectively.
NC State: The Wolfpack picked up their second road victory in as many weeks with a victory at Virginia. NC State scored 24 unanswered first-half points to grab control. QB Devin Leary threw a pair of first-quarter touchdown passes and RB Zonovan Knight added a 35-yard TD scamper to put NC State in control. The Wolfpack defense made a pair of goal-line stands, stopping UVA at the 1-yard line twice. NC State Chapter Vice President Dylan Autenrieth started at tight end and President Thomas Ruocchio saw snaps on special teams and at tight end.
Syracuse: Four forced turnovers by the Orange defense was not enough to overcome Duke’s strong balanced offense that produced nearly 650 yards of total offense. Syracuse Chapter President Aaron Bolinsky started at long snapper and former chapter leader Nolan Cooney averaged 46.9 yards per punt with half of his eight kicks traveling 50-plus yards including a pair downed inside the 20-yard-line.
Powered by running backs Ricky Person Jr. and Zonovan Knight, NC State won its 2020 season opener in a wild back-and-forth affair with Wake Forest. Person and Knight combined for 196 yards on the ground with three touchdowns.
Person scored the winning touchdown on a 3-yard run late in the fourth quarter and finished with 99 yards and two scores. He also threw a touchdown pass on a halfback option.
Wake Forest, which rallied from 14-point deficits three times, had one final shot to win it. Back-to-back sacks by Vi Jones and Daniel Joseph sealed the Wolfpack victory.
Syracuse: For the second consecutive week the Orange defense gave Syracuse a chance on the road, this week against No. 25 Pitt. Only problem was the Panthers defense was just as strong. The Orange defense produced a pair of turnovers, had eight tackles for a loss, three sacks and held Pitt to fewer than 350 total yards. But the Orange offense managed only 171 total yards and was shut out in the second half of a 14-10 game at intermission. Former Syracuse Chapter leader and punter Nolan Cooney continues to shine. The senior averaged 43.6 yards per punt, registered one of 50-plus yards and dropped two of his six kicks inside the 20.
Notre Dame: The No. 7 ranked Fighting Irish extended its home winning streak to a modern program record 20 games behind six rushing touchdowns from four different players. Notre Dame scored on its first four possessions to seize a 35-0 halftime cushion. Quarterback Ian Book had three rushing touchdowns the first half to become the first quarterback in modern school history with three rushing TD’s in a half. Notre Dame Chapter Vice President JD Bertrand recorded his first career tackle in the second quarter. The sophomore linebacker finished with three tackles.
Clemson: The No. 1 ranked Tigers claimed their home opener with ease and in the process set an Atlantic Coast Conference (ACC) record with their 31st consecutive regular season victory to surpass the 2013-15 Florida State Seminoles. Clemson scored on its first seven possessions, led 28-0 after one quarter and 49-0 at halftime. Fast starts are a trademark of this offense guided by quarterback Trevor Lawrence. Since the start of the 2019 season, the Tigers have now outscored the opposition 219-34 in the first quarter. Clemson Chapter President Will Spiers averaged 46 yards per punt and buried two of his three kicks inside the 20.
Georgia Tech: Offense wasn’t a problem for the Yellow Jackets in their home opener at The Flats as Georgia Tech rolled up nearly 500 total yards. Five turnovers, the most in a game for the Jackets since 2013, was simply too much to overcome against the equally high-powered No. 14 ranked UCF offense. True freshman Jahmyr Gibbs amassed 219 all-purpose yards and scored twice. Gibbs had a rushing and receiving touchdown and set up Tech’s first score with a 75-yard return on the opening kickoff.
Georgia Tech overcame a tough first half that included two interceptions and a pair of blocked field goals to rally from 10 points down to win its season opener on the road against fellow Uplifting Athletes Chapter Florida State.
True freshman quarterback Jeff Sims accounted for 341 total yards in his first start and Jude Kelly drilled a 32-yard field goal midway through the fourth quarter to win it for the Yellow Jackets.
Georgia Tech’s defense surrendered a touchdown on the opening drive of the game before slamming the door by limiting the Seminoles offense to only two field goals the rest of the way.
Clemson: A school record 18th career 100-yard rushing game by running back Travis Etienne along with a stellar outing by quarterback Trevor Lawrence, who threw for 351 yards and scored a pair of rushing touchdowns, powered the No. 1 ranked Tigers to a road victory at Wake Forest. Clemson Chapter leader Will Spiers averaged 42.8 yards on four punts including a 56-yard bomb. The Tigers’ defense registered six sacks and 11 tackles for a loss.
Notre Dame: Sophomore running back Kyren Williams, making his first career start, torched visiting Duke for 205 total yards and a pair of touchdowns as Notre Dame recorded its first ever conference victory. Williams became the first Irish player in the last 25 years to record 90-plus yards rushing and receiving in the same game. Notre Dame Chapter leader and starting linebacker Drew White recorded five tackles.
Syracuse: Led by three interceptions, two by linebacker Mikel Jones, the Orange defense kept Syracuse in the game for three quarters on the road against No. 18 North Carolina. The Orange trailed 10-6 entering the final 15 minutes before the Tar Heels rattled off touchdowns on three consecutive possessions to finish off the determined Orange. Former Syracuse Chapter leader Nolan Cooney drilled four of his nine punts more than 50 yards and averaged a stellar 47.8 yards per kick.
Spend more than five minutes with Marni Cartelli and there is no possible way to miss her passion. She proudly wears it on her sleeve.
What drives her passion is a will and commitment to battle a difficult and complex rare disease that makes a day without pain nearly impossible.
Marni was diagnosed with Complex Regional Pain Syndrome (CRPS) (formerly called Reflex Sympathetic Dystrophy) in 2016. CRPS is a disorder in which pain, occurring spontaneously or from a sensory stimulus, is disproportionately far more exaggerated than it should be.
“Treating rare and medically complex cases like mine takes multimodal approaches. Remove one piece of the puzzle and the care patients receive results in suboptimal outcomes,” said Marni, a former medical worker who suffered a shoulder injury in 2015 that spurred her rare diagnosis less than a year later.
Marni possesses bull-like determination to endure anything and everything in order to keep pushing forward. She has a loving and supportive husband, John, and an outstanding team of doctors she trusts.
Despite all those assets in her toolkit, Marni admits the last several months have been some of the toughest and most difficult during her half-decade rare journey.
Following a physically grueling, but emotionally rewarding, two-week stretch on the road doing rare disease advocacy work, Marni knew her body was going to be wiped out. But, she also knew her critical bi-annual regimen of six weeks of infusion therapy was on deck and that would provide the physical relief she needed.
Marni and John live on Long Island. When New York went into COVID-19 lockdown the third week of March, her six-week infusion treatment schedule evaporated. Her body continued to struggle without the treatment, and there was nothing Marni or her doctors could do.
“It was a difficult decision. You had to weigh the public health part of it when the lockdown happened,” said Dr. Edward S. Rubin, the acute and chronic pain management doctor who is part of Marni’s medical team. “After six or seven weeks people were in such distress, I opened up (treatment) for one person at a time. I would spend six or seven hours on a Saturday doing one person.”
Dr. Rubin brought Marni in for treatments on back-to-back weekends in late April. He offered to do more, but the other shoe dropped and Marni had to refuse additional treatments. Marni and husband John came face-to-face with another reality many rare disease families confront – financial struggles and hardship.
John’s main source of revenue dried up when the entire state of New York court system shut down. He’s an attorney with his own practice so his main source of income evaporated. And when Dr. Rubin offered another round of infusion treatments, the reality was the Cartelli’s couldn’t afford it.
“I feel so much guilt with the financial side of it. John is our income. I get some disability but it’s not much. The financial side of it always weighs heavily on me,” Marni said. “He felt terrible about what was going on, he was watching me deteriorate and struggle. He was willing, if it came to it, to deliver Uber Eats to make some extra money so I could get another treatment.
“My guilt was off the charts. I got the two treatments and I stabilized enough that I figured I could ride it out. It’s torture because I know the money is not there and I also know I’m headed back over that edge. I’m up at night. I’m shaking. My body is breaking down. John is feeding me. It was a dark place.”
She went into a physical and mental free fall she never saw coming. It led her to places she thought were well behind her on her rare disease journey. The end result was several dark and difficult months in lock down.
The loss of hope and that feeling nobody is listening when you are screaming out for help came roaring back for Marni. It was a road she had been down before when she was originally diagnosed in 2016, and didn’t think it was a bridge she would have to cross again.
“That anger and frustration I felt. I pulled away from everyone and I got depressed is the best way of putting it,” she said. “I felt like at times I might as well just crawl in a hole and be done with all this fighting that I’ve been doing. It changed how I view myself. I realized I’m not as over things in terms of my diagnosis and my progress as maybe I thought I was. I really honestly thought I was over it and had moved on and was this bad ass advocate. I’m definitely not.
“I’m still questioning my place. I’m still mourning my old life. And going forward, I’ve wondered what is my value or worth. I think this pandemic brought out some of the best and some of the absolute worst in us as individuals and as a society.”
As she and John started to pick up the pieces and once again focused on what was required to keep moving forward, Marni discovered going back to her roots as a rare disease patient would play a pivotal role.
A chatterbox and outgoing person by nature, Marni found a level of support, inspiration and hope back in 2016 by interacting with other patients with shared experiences inside the Rare Disease Community. Those relationships and friendships fueled her passion.
Marni knew, though, she needed another shot of hope and inspiration to keep battling and fighting. Her passion flame needed another light from the match.
She found it. Only this time it centered around sports – particularly her love of football.
Marni first came in contact with Uplifting Athletes in 2017 at the Global Genes Patient Advocacy Conference. She overheard the team from Uplifting Athletes at the conference talking about football during lunch. Marni is a huge NFL fan and loves her New York Giants. So hearing football talk had her full attention. She had no idea who or what Uplifting Athletes was. But she knew if people were talking football, she wanted to join the conversation.
That was the roots of a blossoming patient-focused relationship using football as the common bond to forge a kinship centered on Uplifting Athletes’ mission and vision colliding to help inspire hope in a patient.
While watching her beloved New York Giants during the NFL My Cause, My Cleats campaign in 2018, she took notice that Giants Punter Riley Dixon was wearing Uplifting Athletes cleats in support of the Rare Disease Community.
Marni avidly supported the New York Giants for many years but this time, after seeing Riley’s cleats, she felt that the players were supporting her. Marni formed an instant bond with Dixon, an Uplifting Ambassador and former Syracuse punter. Since that game, Marni has worn her Riley Dixon No. 9 Giants jersey with pride to her infusions.
The fact a group of athletes under the Uplifting Athletes umbrella cares is a source of great inspiration to Marni. She can feel their support and that impacts her. It also ignites her fire to try and connect the patients in her circle closer with Uplifting Athletes so they know it, too.
“This is about the mental health and well being of the people who make up this community. The medical side of this pandemic presents a whole different set of challenges and obstacles. Those types of challenges we are used to coming together to overcome,” Marni said. “There’s a lot of anger in the rare and chronic community against society because society is acting like what they are going through is difficult.
“This is our world every day. We are screaming at the top of our lungs all the time about needing more help. The mental health side of this is very real for patients and this has made something difficult already even tougher.”
Inspired to move forward, and drawing on the lessons she learned during her dark days in lockdown during the pandemic, Marni is back sharing her fiery passion with others in the Rare Disease Community.
“One of the biggest lessons I’ve learned through all of this is I realized being an advocate is not about everybody else, it’s about me,” she said. “I used to think it was not about me. But I realized in order to help others, I had to take care of me. What happens to me has to mean something to me. I have to continue to fight for empathy for me and everybody else, too. Our community needs help.”
In an effort to introduce more rare disease patients to Uplifting Athletes’ mission, Marni formed a team for the upcoming Uplifting Athletes 7,000 Mile Challenge. Team Passionately Rare already has more than 40 members and Marni welcomes anybody inspired to support the rare disease cause to join her team and be a part of the 7,000 Mile Challenge.
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 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 firstname.lastname@example.org.