Chapter Update: Syracuse nabs first 2020 win in home opener and Baylor rolls to highlight Week 3


Syracuse opened its newly renovated Carrier Dome in style, picking up the Orange’s first victory of the season by taking out fellow Uplifting Athletes Chapter Georgia Tech.

All three phases of the game played a vital role for the Orange, as the offense was powered by 100-yard rusher Sean Tucker, Syracuse’s defense nabbed four interceptions – including a pick-six – and special teams used a 49-yard kickoff return to set up a score and blocked a field goal.

Tucker, a freshman, finished with 111 yards and had touchdown runs of 38 and 4 yards in the first quarter to power Syracuse to a quick 17-0 advantage. Former Syracuse Chapter leader and punter Nolan Cooney continues to shine for the Orange. The senior averaged 49.2 yards on five punts including a long of 55 yards and dropped one inside the 20-yard-line.

Baylor: Senior running back Trestan Ebner put together one of the best all-around performances in Bears history, accounting for 272 all-purpose yards and four touchdowns in a victory over Kansas in the season opener. Ebner scored on kickoff returns of 100 and 83 yards, added a one-yard TD run and hauled in an 18-yard touchdown pass. He became the first player in the 25-year history of the Big 12 to score touchdowns on a run, a reception and a return in the same game. Ebner had a rushing and receiving touchdown in the same game last season, but he is the first Bear to record a return for a score and catch a TD pass in the same game since Uplifting Athletes’ Chapter Success Manager Levi Norwood did it in 2013 against Texas Tech.

Georgia Tech: The Yellow Jackets offense posted its third straight 400-plus yard game, but five turnovers and 15 penalties proved too much to overcome on the road against fellow Uplifting Athletes Chapter Syracuse. Georgia Tech outgained the Orange 453-357, but Syracuse turned those five turnovers into 17 points – the final margin on the scoreboard. True freshman running back Jahmyr Gibbs had 105 yards in only his second collegiate game, becoming the first Tech true freshman RB to eclipse 100 yards since 2016. 

NC State: A slow start hampered the Wolfpack on the road against No. 20 Virginia Tech. The Hokies outgained NC State 166-36 in the first quarter and led 17-0 after 15 minutes. One bright spot, Wolfpack kicker Christopher Dunn drilled a career-long 53-yard field goal as time expired in the first half. Dunn’s boot tied for the fourth longest kick in school history, and the longest since John Deraney had a 54-yard FG in 2006. The field goal was Dunn’s 13th consecutive dating back to last season.

Florida State: Roughed up by a Miami defense that posted six sacks, 13 tackles for a loss and three interceptions, the Seminoles dropped to 0-2 with a road loss to the Hurricanes. Florida State Chapter President and linebacker DeCalon Brooks had three tackles and broke up a pair of passes.

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 Marist Kicker and Chapter Vice President Luke Paladino.

Beyond The Trophy 2020: Get to know Marist Chapter Vice President and kicker Luke Paladino


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: Luke Paladino

College: Marist College

Height, weight, class, position: 5-11, 143 pounds, redshirt sophomore, kicker

High School: Penfield Senior High School in Rochester, New York

About Luke: The New York native took over the primary kicking duties for the Red Foxes as a redshirt freshman in 2019 and delivered a stellar first season. Luke not only tied the school record with a 49-yard field goal against Stetson, he also added two more field goals from 45 yards or longer. He made 11 of his 14 field goals (79 percent) and finished the season with 61 total points. He was a Pioneer Football League honorable mention selection and was also on the PFL Academic Honor Roll. After participating in the inaugural Marist Chapter Lift For Life in 2019, Luke stepped into a leadership position and attended the 2020 Uplifting Athletes Leadership Development Conference.

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

PALADINO: Hitting a school record field goal my freshman year. 

What drove you to get involved with Uplifting Athletes?

PALADINO: My good friend, Paul Olivett, started the Marist Chapter so I wanted to help him and get involved in it.

What have you learned from your experience with Uplifting Athletes?

PALADINO: This experience makes me want to help create new experiences at my college because I’ve learned new ways to fundraise and raise awareness for the Rare Disease Community.

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

PALADINO: Take the offer that has the best “whole” experience such as academics, location, etc. rather than just for football reasons.

Who is your favorite NFL player and why?

PALADINO: Peyton Manning. I have loved him since the early 2000’s and he was my childhood hero.

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

PALADINO: Frank Sinatra. He is a legend and I would want to talk to him about his experiences in life.

LUKE ON THE HOT SEAT

What is your perfect pizza?

PALADINO: Plain cheese pie

All time favorite movie?

PALADINO: Inglorious Bastards/Interstellar

What is your go-to fast food restaurant?

PALADINO: Chipotle

Favorite sports team (any sport)?

PALADINO: University of North Carolina Tar Heels

What is the most used app on your phone?

PALADINO: Snapchat

Chapter Update: NC State wins wild 2020 season opener and two other teams notch Week 2 victories


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.

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 Notre Dame Linebacker and Chapter Vice President and  JD Bertrand.

Beyond The Trophy 2020: Get to know Notre Dame Chapter Vice President and linebacker JD Bertrand


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: JD Bertrand

College: University of Notre Dame

Height, weight, class, position: 6-1, 228 pounds, sophomore, linebacker

High School: Blessed Trinity High School in Alpharetta, Georgia

About JD: The linebacker saw action in four games as a true freshman on special teams in 2019 after heading to Notre Dame as one of the Top 20 linebackers in the country in his recruiting class. JD made his college debut at home against Bowling Green. Part of a team that won back-to-back Georgia Class AAAA State Championships in 2017 and 2018, JD became a leader for the Notre Dame Chapter after one season and campus and attended the 2020 Uplifting Athletes Leadership Development Conference.

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

BERTRAND: The first time doing the Notre Dame walk and running out onto the field. 

What drove you to get involved with Uplifting Athletes?

BERTRAND: A lot of the older guys on the team spoke highly of the organization and I was interested in finding something where I could give back to others.

What have you learned from your experience with Uplifting Athletes?

BERTRAND: I learned how much can be done if the money raised is used well.

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

BERTRAND: Don’t worry about recruiting. Just focus on your game and developing yourself. If you do that, then coaches will come.

Who is your favorite NFL player and why?

BERTRAND: Former Carolina Panthers linebacker Luke Kuechly because he has such a strong mental knowledge of the game.

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

BERTRAND: I would take either Tim Grover or David Goggins to hear their advice and to pick their brain.

JD ON THE HOT SEAT

What is your perfect pizza?

BERTRAND: Cheese with veggies

All time favorite movie?

BERTRAND: Lone Survivor

What is your go-to fast food restaurant?

BERTRAND: Chipotle

Favorite sports team (any sport)?

BERTRAND: Atlanta Falcons

What is the most used app on your phone?

BERTRAND: Snapchat

Chapter Update: Georgia Tech rallies past Florida State and two other teams post Week 1 victories


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.

Each week during the college football season we will feature a player who is an officer for an Uplifting Athletes Chapter. This week we present Colgate quarterback and Chapter President Jake Froschauer

Beyond The Trophy 2020: Get to know Colgate Chapter President and quarterback Jake Froschauer


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 Froschauer

College: Colgate University

Height, weight, class, position: 6-3, 210 pounds, senior, quarterback

High School: Summit High School in Summit, New Jersey

About Jake: A three-sport athlete who also played basketball and baseball, Jake came to Colgate with four years of experience, a 35-9 record and leadership skills as a team captain his senior year. The two-time Patriot League Academic Honor Roll member saw his first collegiate action in 2019 when he made four appearances as the Raiders’ QB including one start against Maine where he threw for 75 yards and a touchdown in the first half before going down with an injury. Jake has a personal family connection to the Rare Disease Community and after participating in Lift For Life events, he stepped up and became a Chapter Leader in 2020.

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

FROSCHAUER: Getting my first collegiate snap against Air Force.

What drove you to get involved with Uplifting Athletes?

FROSCHAUER: I decided to get involved with Uplifting Athletes because it supports a great cause and I have had family members pass away from rare diseases.

What have you learned from your experience with Uplifting Athletes?

FROSCHAUER: How important it is to support young rare disease researchers because it is difficult for them to have access to funding.

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

FROSCHAUER: I would tell them to focus on your game and to be as transparent as possible with coaches. Communication is the key.

Who is your favorite NFL player and why?

FROSCHAUER: Taysom Hill of the New Orleans Saints because of his versatility.

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

FROSCHAUER: Michael Jordan because he is the greatest of all time (The G.O.A.T). 

JAKE ON THE HOT SEAT

What is your perfect pizza?

FROSCHAUER: Buffalo chicken

All time favorite movie?

FROSCHAUER: Top Gun

What is your go-to fast food restaurant?

FROSCHAUER: Chik-fil-A

Favorite sports team (any sport)?

FROSCHAUER: Chicago Bears

What is the most used app on your phone?

FROSCHAUER: Instagram

Complex rare disease has Kaci Adams searching for medical answers


Kaci Adams isn’t a doctor, but sometimes she has to feel like one. The married 43-year-old mother of three has the rare disease Klippel-Feil Syndrome (KFS).  

Klippel-Feil Syndrome is an extremely complex disease with many potential symptoms and disease paths. Finding a medical specialist or expert to advise and help with her rare struggle has been difficult.

“I found out a lot about my disease on Facebook,” said Kaci, who lives in Vancouver, Washington. “I do a lot of my own research. I buy books, read articles and do whatever I can to get as much of the best knowledge as I can about myself.”

Klippel-Feil syndrome is a rare bone disorder characterized by the abnormal joining (fusion) of two or more spinal bones in the neck (cervical vertebrae). The specific symptoms associated with KFS vary greatly from one person to another.

In addition to the fusion of certain vertebrae, KFS can be associated with a wide variety of additional anomalies affecting many different organ systems of the body. The progression and severity of KFS can vary greatly depending upon the specific associated complications and the Class of KFS. Some cases may be mild; others may cause serious, life-long complications.

“It started five years ago around Christmas I was having neck pain and it wasn’t going away. I thought maybe I was sleeping funny or something,” Kaci said. “I saw a doctor and was told they found KFS. Then I had surgery done on my upper spine. I was told I wouldn’t be in pain anymore. I had high hopes. But the pain was still there. So I did more PT and pushed through and the pain was still there.”

And five years later, the pain is still a major issue complicated by a growing list of symptoms associated with her KFS diagnosis including fibromyalgia and Chiari malformation (CRE) Type I.

“It’s been a long journey over the last years to find doctors who know what they are doing,” Kaci said. “With everything going on, I can kind of put two and two together now if I look back based on everything I know now.

“In all honesty I still haven’t been given enough information from doctors so far. I’m doing a lot of the research on my own to figure out what tests I might be able to take and being able to explain the issues I’m having to maybe, hopefully, finding an answer as to why.”

What Kaci knows for sure is the pain she experiences is fairly consistent and prevalent. And that constant battle, plus trying to be a mother to her two daughters at home, Mackenzie (14) and Averie (11), makes each day a challenge.

“It’s the pain, and trying to manage the pain that is tough,” Kaci said. “I see a pain management doctor who is amazing. We try something and it works for a while and then it doesn’t. I’ve tried so many things for pain.

“I have moments where I ask myself … I’m only 43 and is this what I have to look forward to the rest of my life?”

The impact of her daily struggles – extremely rare and complex disease, multiple symptom flare-ups, lack of information from medical experts and pain – has been exacerbated in 2020.

Kaci isn’t exactly sure medically speaking if she would be classified as having an underlying condition that would put her at higher risk if she contracted COVID-19.

All she knows is that since March when the pandemic first hit the United States, her anxiety has been elevated on many fronts.

When the virus first appeared Kaci said she was nervous and kept close tabs on what was happening. She and her girls stay inside for the most part. Her husband of nearly 15 years, Seth, does all the shopping. Seeing people refuse to wear face coverings not only angers Kaci, it makes her even less inclined to leave the house.

“To be honest I’m terrified,” she said. “I don’t want to get this. I have no idea how this would impact me. My one daughter has some of the same physical issues as me and that has me very, very nervous as well. I’ve basically been isolating.”

Staying at home and not being able to go out or do much isn’t a stretch for Kaci. It’s been a good bit of her life the last five years. Seeing how family, friends and fellow Americans have dealt with this has been oddly bizarre in her view.

“It was weird to see people having to live at home and deal with the same kind of isolation I’m used to. It was still bizarre, but I could relate for sure. It sucks, right?” she said. “I really feel for people because it’s been difficult and hard. But we have this whole community of people with rare diseases that this is their life.” 

Kaci feels compelled to advocate for herself and other patients in the Rare Disease Community despite the current circumstances in the world.

“Those of us in the Rare Community are used to unknowns. We are not afraid. My hope is that this is an eye-opener for people,” Kaci said. “Be more intentional about what matters, being respectful of others and listen to what science is saying.

“I want more doctors focused on rare diseases, but right now they need as many of them as possible working to stop this virus. Be grateful for the work they are doing.”

A rare journey inside a COVID-19 world


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.

“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.”

Marni Cartelli

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. 

A rare journey inside a COVID-19 world: Part 2


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.

A rare journey inside a COVID-19 world: Part 1


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.