Loss of love, light and hope spurs one woman to create a rare disease legacy for her son

In the time it takes to bring a life into this world, Allison D’Ambrosio Bones watched two precious lives leave. 

And not just any lives. In a short five-month span, Allison lost her husband Jamie to cancer, and then her son, Travis, to a hidden, deadly rare condition. She struggled with her life’s purpose, but providence brought her into the Rare Disease Community and offered her a chance to create a legacy for her child.

Travis Bones, then just 4 years old, died suddenly of Isolated Congenital Asplenia in 2018. The extremely rare and often undiagnosed genetic disease left him without a functioning spleen, which is crucial to the immune system. Being born without a spleen left Travis with no defense against life-threatening infections. 

“I see signs of Travis everywhere. My son keeps showing up. That connection is very visible. And above all else, I fear nothing anymore.”

Allison D’Ambrosio Bones

ICA is virtually undetectable. There is no diagnostic test or genetic screening to uncover the condition. Even with weekly ultrasounds by a maternal-fetal medicine specialist, no one ever noticed Travis had only a splenic remnant. It was only after his autopsy that the boy’s condition was revealed.

“It literally came out of nowhere,” Allison said. “He had never been in the hospital and was rarely sick. I had no idea what was going on. Here was this perfectly healthy, happy, full-of-life child breathing life into me and in a matter of 20 hours after spiking a fever, he was gone. He died five months to the day – August 25, 2018 – after his dad passed.”

Those deaths alone would have shattered most people. But Allison carried an even heavier burden. In 2012, she struggled with a difficult pregnancy and prematurely gave birth to twins at 24 weeks gestation. Days after they were born, the babies died.

“When we lost the twins there was still hope,” Allison said. “Jamie and I still had each other. We had been married for 12 years at that point, so I knew him well. In many ways, the deaths of Dalton and Shelby drew us together as a couple. Our faith relationship grew, and we turned toward each other. More than anything, we grew up. It was the hardest thing we had ever experienced.”

There would be more difficult life experiences ahead, though. Travis brought back light and hope when he came along late in 2014. But just four months later, Jamie was diagnosed with colorectal cancer then Allison’s father passed away in late 2015 after a nine-year fight with two cancers. 

Dealing with an infant and Jamie’s complicated initial surgery and treatment protocol and her father’s deterioration made for some tricky and hectic months. Still, Allison and Jamie had each other and hope. And that was enough, for a while. Gradually over the next three years, Jamie slowly lost his battle and on March 25, 2018 Travis lost his father.

Travis’ personality was big, bold and full of life for a young man his age.

Wounded, angry and struggling, Allison was all too familiar with the loss of a deep and passionate love. Travis was healthy, or so she thought, and raising her son provided more than enough purpose for her to cling to hope. As she slowly settled into her new normal as a widow raising a young son, what happened next to Allison sent her reeling.

“When I lost Travis, I was so alone,” Allison said. “It was different than before. There was no hope. There was no dream of more children. Honestly, I had to have some place for my anger to go.

“It still boggles my mind that this perfectly healthy four-year-old, who only six days before he passed, we had 50 people at his birthday party, was now gone.”

Travis’ personality was big, bold and full of life for a young man of his age. Even today Allison continues to find strength, inspiration and hope through Travis’ personality.

His big personality was evident in the way people were drawn to him, flocking to him on the Tee ball field, at church and in stores and restaurants. He would talk with anybody in the room. His full-of-life giggle was infectious and he wanted to share it with anybody and everybody, telling stories to make people laugh. He boldly shared his opinion on everything from food to clothes to cars. His curiosity for life already had him chasing dots to connect and his huge smile told you life was pure joy.

The rare genetic disorder that robbed Allison of all that personality and her foothold in life provided the catalyst to move forward. She became an expert on ICA, was troubled by its lack of detectability and driven by a calling to not let her love of Travis dull over the natural course of time.

Armed with a business degree from Baylor and a wealth of real-life work experience, but absent a real understanding of working full-time in service to others, Allison wanted to do something, anything to ensure others in the ICA world would not have to endure the road she’s traveled.

It takes courage to turn the thing that breaks your heart into an integral part of your day-to-day mission and purpose. 

Allison founded T.E.A.M. 4 TRAVIS (Together Ending Asplenia Mortality) in 2019. The foundation is Travis’s legacy, ensuring the boy’s megawatt smile and exuberant love of life carry on forever. The work is difficult, rewarding and full of battles where hope and expectations are challenged by reality. Allison knew it wasn’t going to be easy. In so many ways, though, it was all she had.

“It gives me that connection to a family that was ripped away from me.”

“I need hope to have a reason to live,” she said. “This gives me hope that in some way — because of the work we are doing — one day in the future another child has a chance at life because of Travis. Because I continued to be his voice and refused to take no for an answer, perhaps the life of one child is saved.”

What she has discovered in the months since launching is the life shrapnel Allison carries has altered her perspective. She set out looking to help others. What she has discovered along the way is being a passionate rare-disease advocate is giving her the courage and strength to keep going. 

“If I weren’t doing this, I’m not sure I’d be here. I really don’t know,” she said. “It gives me that connection to a family that was ripped away from me. I feel like working on the foundation is my only way of making some sense out of an utterly senseless tragedy.”

The future is cloudy for Allison and running a rare disease advocacy organization is full of highs and lows. Research is a process, not always a solution. The fact ICA is extremely rare presents its own unique set of challenges. Allison has a sense of urgency and commitment despite some of those around her having concerns about moving too fast.

Allison is working with researchers who discovered a genetic mutation, including an ICA young investigative researcher to advance science and treatments. Uplifting Athletes funds research grants in partnership with advocacy organizations like Allison’s through its Young Investigator Draft. Allison has a short-term goal of T.E.A.M. 4 TRAVIS being eligible for a Young Investigator Grant.

“Right now, I’m 100 percent committed,” Allison said. “This is my way to take that compounded grief and continue to be Travis’s mom. If I don’t get to mother him in the traditional way, I get to leave his legacy and mark on this world.

“I see signs of Travis everywhere. My son keeps showing up. That connection is very visible. And above all else, I fear nothing anymore.”

Marine Corps veteran Chris Kaag using his rare disease diagnosis to help, serve and inspire others

For decades they have been looking for the few and the proud. In Chris Kaag, the Marines found such a man.

A Marine is a Marine. There is no such thing as a former Marine, according to the 35th Commandant of the Marine Corps, Gen. James F. Amos. When your days in uniform are over, you’re still a Marine, Amos says. You went through Parris Island, San Diego or the hills of Quantico and you made yourself into one of the few and the proud. A Marine is what you’ll be forever.

Meet Chris Kaag. He’s a Marine. He’s been gung-ho since he was seven years old. Being a member of the Corps runs deep in his family bloodlines and it was all he ever wanted to be. Chris became a Marine in 1994. The path was full of challenges and difficulties, but he made it off Parris Island and was a different person because of it.

“My dad, my grandfather, my uncle and my brother after me were all Marines. I grew up hearing Marines stories. I looked up to my Dad a lot,” Chris said. “When I was seven year old, I remember going to the mall and buying a Marines license plate. I wrote letters to the Marine Commandant. I really wanted to be a Marine.”

Today, Chris is in his mid-40s and a lot has changed in his life. At the age of 21, he faced his ultimate defining moment when he was diagnosed with adrenomyeloneuropathy (AMN), a rare and genetic degenerative nerve condition that has a laundry list of physical and cognitive impacts. In Chris’ case, AMN ultimately took away his ability to walk.

“While I don’t wear a Marine Corps uniform anymore, I still am a Marine. I am still serving. I still dedicate my life to helping as many people as I can.”

Chris Kaag, Founder Corps Fitness and IM ABLE Foundation

No matter what AMN might have robbed Chris of physically and mentally over the course of nearly a quarter century since his diagnosis, it hasn’t changed the way he approaches life.

That voice in his head, the one that belongs to drill instructor Sgt. Hart from basic training, is still crystal clear all these years later.

“Don’t (you) quit on me, Kaag.”

Chris never quit on himself then when DI Hart was barking into his face. The pure joy of accomplishment and not letting anybody down in the process, including himself, was a point of great pride.

Little did Hart know that his five simple words from Parris Island would become part of a movement inspired by Chris. The Penn State graduate lost the ability to actively serve his country in uniform to a rare disease. Since that day, he’s spent his life looking for ways to help and serve others.

You don’t have to wear a uniform to have honor.

“All I’m trying to do is motivate others, disabled and able bodied, to redefine the way they view their own personal challenges,” said Chris. “We all have obstacles, but it is how we respond that makes us who we are.”

Chris, who says he was a lazy kid growing up despite his passion to become a Marine, was in no shape for boot camp. He arrived at Parris Island a “fat ass and lazy SOB,” he says. Three demanding months on The Island flipped that script in a hurry.

After boot camp Chris embarked on a career in avionics and was enjoying life overseas assigned to duty in Italy. One day while out on a run, he noticed a drag in his feet that he had not experienced before and that was the initial step on what would become his new life journey. 

AMN struck quickly after Chris began to show symptoms at the age of 21. Like many rare disease patients, it took a litany of tests and potential diagnoses to nail down exactly what he was facing. He spent nine weeks at Walter Reed Hospital in Washington D.C. before finally getting some mental relief with his AMN diagnosis.

The disease impacted him at a rapid pace. He went from walking with a cane to using two canes and finally was in a wheelchair within five years of his diagnosis. He wasn’t even 30 years old yet and already the life he had come to love and adore wearing the uniform as a United States Marine seemed like a very distant memory.

“I have had my share of bad days. We all do, and I still have mine,” said Chris. “I fought getting into a chair for a long time. I used to walk with two canes for too long of a time. I wanted to use my legs as long as I could. When I finally got into a chair, I wondered why it took me so long.”

Chris has spent more than two decades improvising, adapting and overcoming. He didn’t let his rare challenges stop him from being the leader he was born to be, and refused to let his rare disease define him.

Following his medical discharge from active duty, Chris returned home to Pennsylvania to “figure some things out” and find ways to start moving forward.

He went to college at Penn State Berks and graduated with a business degree in 2004, but had trouble finding the right job.

Enter his time and training in the Corps.

One of the core values of the Marines is when you find yourself in a tight spot, it is incumbent on you to find a way to improvise, adapt and overcome to find a solution.

Deep down Chris knew he was a servant leader. His life mission to use his knowledge and training to help and serve others tugged at him. It was time to improvise, adapt and overcome.

“I really don’t know why I was blessed to have the attitude I do to get over things,” Chris said. “I just try to reassure people that there are opportunities. And there is hope. You just have to find the right people to help, whether that’s me or somebody else. Each life is different.

“I’m the happiest SOB you’re going to meet. Just because I’m in a chair, don’t judge me or think I’m not living my best life. That’s the kind of confidence and can-do attitude I want to give to everybody.”

Armed with his Penn State degree, but unable to find a job that met his desire to serve others, Chris started his own business – Corps Fitness – out of the back of his pickup truck in 2004. Being a desk jockey just wasn’t his cup of tea.

Chris’ dream job of becoming a Marines Corps Drill Instructor couldn’t happen, but he could lead people on a life journey of fitness by becoming their instructor. Three years later, in 2007, he added another layer by starting the IM ABLE Foundation to go along with Corps Fitness.

His foundation seeks to transform lives by removing obstacles for those diagnosed with physical, cognitive, or behavioral challenges by being physically active and redefining what is possible.

IM ABLE is focused on providing adaptive equipment to those in need. They started off by providing hand cycles, with a price tag anywhere from $2,000 to $10,000. And over the years they have adapted to the expanding market of equipment available, including mountain bikes and adaptive skis, for example.

Today, IM ABLE has roughly 20 pieces of adaptive equipment available for individuals to give a test run. Chris also expanded what his foundation does by connecting veterans, especially those with PTSD, with some of his adaptive youth. As you would expect, military veterans like himself hold a special place in his heart.

Chris has spent more than two decades improvising, adapting and overcoming. He didn’t let his rare challenges stop him from being the leader he was born to be, and refused to let his rare disease define him. Instead, Chris defined himself through his rare disease.

He found a way to be a leader and teacher through physical fitness and sport and by doing so has served as an inspiration of what is possible. His foundation serves as a vehicle of hope for those who face physical or mental hurdles. Chris believes anything is possible, has proven it, and is keen on sharing that core belief with as many people as possible..

Looking back, Chris, who has been married to his wife Gretchen for more than a decade with whom he shares their son Carter, realizes he always wanted to please others and was most happy helping people feel good about themselves. It was the part of who he is that needed to be nurtured and harvested to be fully realized.

Being a United States Marine, even his short stint on active duty, and being diagnosed with a genetic rare condition that changed the course of his life have blended to bring Chris’ passion and purpose front and center.

“While I don’t wear the Marine Corps uniform anymore, I still am a Marine,” Chris said. “I still am serving. I still dedicate my life to helping as many people as I can.”

There are no former or ex-Marines. Chris is still just a Marine.

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.”

Executive Director Rob Long chosen by NORD as 2021 Rare Impact Award honoree

Uplifting Athletes Executive Director Rob Long has been chosen as a 2021 Rare Impact Award honoree by the National Organization for Rare Disorders (NORD).

The Rare Impact Awards celebrate the individuals, groups and companies making extraordinary strides on behalf of the millions of Americans impacted by rare disease.

“Despite the pandemic and the challenges we have faced, there are still heroes to be found among us from whom we can draw inspiration and motivation to keep moving forward,” said NORD President and CEO Peter L. Saltonstall. “At NORD, we are proud to honor these people, groups and companies for their achievements. We’re humbled to work alongside them and appreciative of their tenacity and commitment to a brighter future for our community.”

Rob and the rest of the 2021 honorees will be celebrated on June 28 during a live streaming event that starts at 7:00 p.m. EST.

Rob is a rare disease patient who had his life turned upside down more than a decade ago when he was diagnosed with a rare and aggressive form of brain cancer called anaplastic astrocytoma. His prognosis at the time was less than encouraging, and his surgery, recovery and treatment took 16 months. An All-American punter at Syracuse, Rob was on a path to the NFL when he was diagnosed and lost out on that opportunity.

After joining Uplifting Athletes in 2016, Rob took over as the second Executive Director in the organization’s history late in 2018. In his more than two years as the Executive Director, Rob has advanced the impact Uplifting Athletes has on the Rare Disease Community significantly on two fronts. 

First, as a patient, he has the perspective that allows the organization to actively use their resources to engage with patients, families and caregivers on a deeper level to inspire them with hope.

Secondly, he has been largely responsible for expanding Uplifting Athletes’ commitment to funding research through the Young Investigator Draft. When Rob took over as Executive Director, the Young Investigator Draft was just getting started. Because of Rob’s unique and personal experience as a patient himself, he has charted a new and innovative way to support rare disease research.

Under Rob’s guidance, Uplifting Athletes has provided more than $300,000 in funding to 18 different rare disease researchers through its first three Young Investigator Drafts. From year No. 1 to year No. 2 the amount of each individual grant doubled, and in 2021 the organization committed to expand the number of grants it provides and established the Underrepresented Researchers in Medicine initiative to ensure underrepresented minority researchers are funded and celebrated through the Young Investigator Draft.

The Rare Impact Awards program is part of the Living Rare, Living Stronger NORD Patient and Family Forum, an annual conference that brings patients and families, advocates, health care professionals and other supporters together for learning, sharing and connecting.

2020 Rare Disease Champion Team: Learn more about Northwestern defensive tackle Joe Spivak and what his inspiration means to a rare disease patient

Joe Spivak

University: Northwestern University

Vitals: 6-0, 300 pounds, senior, defensive lineman

Quick Hits: 2020: A natural leader, Joe was a three-time captain in high school, becoming the first sophomore football player chosen as a captain at Esmark High School in Chicago. Joe has appeared in 36 games for the Wildcats since his true freshman year in 2017, including 22 the last two seasons. He made his first career start at defensive tackle against Iowa in the second game of the 2020 season and went on to start the next nine games for the Wildcats during their run to a Big Ten West crown and a second appearance in the conference title game in the last three years. In the Citrus Bowl victory over Auburn, Joe notched his first career solo sack. The two-time Academic All-Big Ten selection is a leader on so many fronts, and has brought his intense passion and purpose to the Rare Disease Community by serving as a leader in the Northwestern Chapter of Uplifting Athletes since 2018. He continues to serve as the Vice President of the chapter and is using his platform to make a difference in the lives of patients across the country.


“The week Northwestern football was preparing for its 2020 Big Ten Championship game against Ohio State I was getting some surprising and devastating news, I stopped responding to treatments.

This is one of every rare or chronic illness patient’s worst fear. We have so little options to begin with that we consider it almost a miracle when something works. So, to hear that my already limited pool of therapeutics had shrunk further was a true gut punch. But I was really looking forward to the game. It had now become not only a chance to root for my team, but a much-needed distraction.

It was Thursday of championship week and my phone rings. On the other end is none other than a couple of Northwestern players I have come to admire, Joe Spivak and Pete Snodgrass. They were checking in with me, to see how I was doing.

When I assured Joe that if they were busy, they could put off the call until after the season he told me, “Marni, we will always find time to talk to you.” I bet you are wondering what ultra-inspiring conversation we had?

We talked about smoking meat. Yup, that is right we talked about different types of smokers and what meats you can use them for. We also talked about future goals, but mostly, smoking meats.

Why do I share this? It’s simple, it shows two sides of Joe Spivak. The side that puts other people first and made sure that the week of his big game a rare disease patient knew she was still thought of, and the side that is just genuine and has you laughing so hard as he ponders what meat he can come up with to try and smoke.

In the Rare Disease Community, we are used to people caring about us who have a connection to the space. But I met Joe when he reached out to me, a total stranger, to learn about the rare disease experience.

When he realized how I was struggling, he kept that relationship going and encouraged me to push past the shadows and to fight the disease consuming my body. He never once gave up on me and made me realize I am more than this disease. With his support I took the steps to see what my body really was capable of.

I started working with a physical therapist and strength coach and the girl who couldn’t walk around the block without her cane can now jog. I was told by several doctors to accept that my arm was a loss, the disease too far gone in ravaging it. Before the Wildcats’ 2020 season I couldn’t lift it past shoulder height and that was with excruciating pain. Now, I have close to full range. 

Sometimes there are so many voices in the world telling you “you can’t” it becomes suffocating. Hearing a stranger tell you “I believe you can”, can be the most powerful tool you have.

It becomes the voice that echoes in your mind when you have those “bad” disease days, curled up in a ball on the floor screaming in pain. It becomes the words that get you through the doctor’s appointments where they tell you news you were dreading, and it becomes the voice you make the loudest when those other voices begin to bombard you.

Joe Spivak is whose voice is in my head.”

Marni Cartelli


“I love football… but even more than that, I love the relationships that football has brought into my life. I believe that Uplifting Athletes is extending these unbreakable bonds into a community that needs them more than ever. To be able to serve as an example and extension of family to rare disease patients and families is what is really awesome!” – Joe Spivak

2020 Rare Disease Champion Team: Learn more about Austin Peay defensive lineman Josephus Smith’s rare courage and commitment

Josephus Smith

University: Austin Peay State University

Vitals: 5-9, 285 pounds, senior, defensive tackle

Quick Hits: Josephus had a breakout 2019 in his second season with APSU after transferring from Miles College in Alabama. The three-time member of the Athletic Director’s Honor Roll earned first-team All-Ohio Valley Conference honors after posting 18.5 tackles for a loss. He at least assisted on one tackle for a loss in nine of the 15 games that season. Josephus was a big part of APSU winning its first Ohio Valley Conference title since 1977 and the Governors went on to play in three FCS playoff contests with Josephus registering five postseason tackles. APSU played only three games in 2020 before COVID-19 issues scuttled the season. Josephus picked up right where he left off, registering seven tackles, one sack, one tackle for a loss and a forced fumble in only two games. Josephus and his wife, Shermiria, welcomed their second daughter to the world in May of 2020 at the height of the pandemic. Madison was born premature with Congenital Diaphragmatic Hernia (CDH), a rare abnormality that happens to 1 in 2500 babies. The struggles and battles the Smith family has endured during their journey to save the life of their child, trying to stave off a deadly rare condition is what every parent would do. For Josephus and Shermiria to continue their educations and his football career has been a challenge unlike any other.


Coming off his best season as a college player in 2019, Josephus Smith was firing on all cylinders. The bulky defensive tackle was fulfilling his dream of playing Division I football when so many told him he couldn’t because of his size. He married his high school sweetheart, Shermiria, and the Smith’s were on the cusp of welcoming their second daughter into the world in 2020.

The road to becoming a first-team All-Ohio Valley Conference selection, Athletic Director’s Honor Roll student, loving husband to Shermiria and proud father was full of hard times and tough decisions.

Little did the Smith’s know that football, college degrees and even the near future were about to take a back seat. Those tough times and difficult decisions they already endured were about to serve them well.

In February, when the Smith’s were about to find out the gender of their second child, they were told unborn daughter Madison had Congenital Diaphragmatic Hernia (CDH), a rare abnormality that happens to 1 in 2,500 babies.

CDH is a condition present before birth characterized by abnormal development of the diaphragm. The severity of CDH may range from a thinned area in part of the diaphragm, to its complete absence. CDH may allow the stomach and intestines to move through an opening (hernia) into the chest cavity, crowding the heart and lungs. This can then lead to underdevelopment of the lungs, which may cause life-threatening complications.

The Smith’s immediately started doing research on the rare disease to find out the best information and resources available for them to make the best decisions possible for Madison.

Already facing a 50 percent chance of survival before being born, Madison’s odds became even longer when at 29 weeks Shermiria developed severe preeclampsia. The best solution for Shermiria was to deliver Madison as soon as possible.

At 29 weeks, though, for a baby with CDH, Madison would be too small to go on Extracorporeal Membrane Oxygenation (ECMO), which would greatly increase her chance of living.

The Smith’s found a CDH Facebook group and learned more about a doctor in St. Petersburg, Florida who was having a 95 percent success rate with CDH babies.

They prayed, talked to family and friends and decided heading to Florida to seek out Dr. David Kay would give their daughter the best chance for survival. In the middle of the pandemic, with Shermiria suffering from severe preeclampsia, the Smith’s risked everything. Football career, college degrees, a mountain of medical bills – none of it mattered to Josephus.

His wife, daughter and family came first and that was priority No. 1. He would sort out the details of everything else later. 

Ten days after arriving in Florida, Madison was born on May 20th at nearly 33 weeks. Six days later she had her first surgery and remained hospitalized until late July.

The fight will continue for Madison. Children born with CDH can have issues into infancy. 

Bills have piled up at home and in Florida. Josephus and Shermiria are two college students with a family trying to make it work on a limited budget. To give Madison a fighting chance they had to take on the debt.

Their situation is unique and inspiring. The NCAA has approved a fundraising campaign to support the Smith family that in no way impacts Josephus’ eligibility. Click here to support the Smith family. 


“It was tough having to be in Florida, seeing Madison struggle with tubes in her and crying. We couldn’t pick her up or comfort her. It was pretty tough as parents seeing her going through that. It’s been tough because you don’t really know what’s next.” – Josephus Smith

2020 Rare Disease Champion Team: Learn more about Stanford head coach David Shaw and the rare bond with his younger brother

David Shaw

University: Stanford University

Vitals: Head Football Coach

Quick Hits: The 1995 Stanford graduate is the fifth alum to hold the position of head football coach. David is the 34th head coach in program history and just completed his 10th season at his alma mater. He is the winningest coach in program history with a 90-36 (.714) career record including 62-25 (.713) in Pac-12 play. David has guided Stanford to three Pac-12 titles since he took over in 2011 and a pair of Rose Bowl wins in three appearances. David, who oversaw the final nine years of the 2010s, was instrumental in Stanford’s most successful decade in school history. The Cardinal totaled 98 wins, 42 NFL Draft picks, 28 wins vs. AP Top 25 teams, 24 AP All-Americans, nine Academic All-Americans, five unanimous All-Americans and had a 93.5 average graduation success rate. Each of those categories either led the Pac-12 or was second, while also in the Top 10 nationally. He launched his coaching career at Western Washington, where he coached outside linebackers in 1995 and tight ends in 1996. David’s coaching resume also includes nine years of NFL experience and four years as Stanford’s offensive coordinator before taking over as the head coach. A four-year letterwinner at Stanford from 1991-94 as a receiver, Shaw was a member of Stanford’s 1991 Aloha Bowl team coached by Dennis Green that finished the season 8-4 and was also on the Cardinal team that went 10-3 and won the 1993 Blockbuster Bowl under Bill Walsh. Shaw finished his Stanford career with 57 catches for 664 yards and five touchdowns. Born in San Diego, David and his wife, Kori, are the parents of three children — Keegan, Carter and Gavin.


Coach Shaw knew his younger brother Eric’s battle with an extremely rare and aggressive form of skin cancer was in the final stages. After nearly seven years of radiation, chemotherapy and two failed bone marrow transplants nothing helped. With each failed potential treatment protocol the cancer came back with even greater fury and ferocity.

Coach Shaw and Eric didn’t directly mention what was happening late in 2017 and early 2018 but deep down both knew. Eric was dying. And Coach Shaw, as the big brother, was desperate to find a solution that would give his brother a chance at life.

It took two years for doctors to properly diagnose Eric in 2013 with a rare form of skin cancer called mycosis fungoides, a type of T-cell lymphoma that affects one in 6 million people in the United States and Europe.

After two years of battling as the disease progressed, Eric still didn’t fully grasp the brevity of his situation until the doctors bluntly told him his rare disease was so aggressive he needed to start treatment immediately. Radiation first. If that didn’t work chemotherapy would be next. Eight months of treatments didn’t produce any results and so it was down to the last-resort: a bone marrow transplant.

However, two failed bone marrow transplants in a five-month span left Eric seven years into his fight and it appeared no more viable options remained. 

One final risky option was discussed by the doctors and it involved Coach Shaw. For more than a quarter century doctors had worked on a half-match transplant without much success. By 2018 a new option had become available to try this type of transplant called haploidentical transplants and typically you used the bone marrow of a family member.

Coach Shaw was only a five on the match scale out of 10 when he was originally tested. But this was desperation time and the doctors wanted Coach Shaw to be the donor.

Eric and Coach Shaw agreed it was worth the risk. If they did nothing the disease would come back stronger again and take Eric’s life. The odds, 30 to 40 percent, seemed pretty good compared to the alternative.

Quietly and without saying anything about what was going on, Coach Shaw prepared for the transplant while continuing to coach his team that year. It took an enormous physical toll on him, but it was nothing compared to what Eric had already faced. After 27 grueling days of recovery, Eric and Coach Shaw received a call they didn’t expect but quietly prayed and hoped they would receive. The transplant worked. All the blood in Eric’s body belonged to his brother, Coach Shaw.

In early 2019 Eric was declared cancer free and doctors say the chance of his rare condition returning are less than one percent. The Shaw brothers shared their rare disease journey publicly for the first time in 2020 to inspire others with hope.


“I had a rare disease, battled it together with David and my family for a long time. Ultimately, David became my bone marrow transplant donor and he is the reason I am here today because he saved my life. Thank you, David.” – Eric Shaw

2020 Rare Disease Champion Team: Learn more about Syracuse quarterback Rex Culpepper overcoming his rare cancer battle to shine on the field

Rex Culpepper

University: Syracuse University

Vitals: 6-3, 221 pounds, senior, quarterback

Quick Hits: A native of Florida who has a vast arsenal of talents and interests off the field, Rex persevered to become the Orange starting quarterback the second half of the 2020 season. The three-time ACC Honor Roll and seven-time SU Athletic Director’s Honor Roll selection made five starts at quarterback, threw for more than 1,000 yards with nine touchdowns and produced a memorable moment with a celebration of his first touchdown pass in more than three seasons. Diagnosed with a rare form of testicular cancer prior to the 2018 season, Rex came back to become one of 10 nominees for the inaugural Jim DaRin Courage Award and was a finalist for the 2018 Orange Bowl-FWAA Courage Award.  He layed quarterback, tight end and was an up blocker in kickoff coverage during his colorful Orange playing career. Some of his off-the-field hobbies include playing the guitar and piano, repairing motorcycles and, during COVID-19 lockdown, he learned the ins and outs of the stock market. Rex owns the Syracuse record for most passing yards by a quarterback in his first start when he threw for 280 yards against Boston College in 2017.


There isn’t much conventional about the Syracuse quarterback from Florida whose father played in the NFL for nearly a decade and whose parents, Brad and Monica, have been contestants multiple times on the reality television show “Survivor”. Rex, like his parents, is a multi-talented free spirit with the fight and determination of a badger when facing adversity.

Rex lost his senior year of high school to a torn ACL suffered during a 7-on-7 workout during the summer and missed his redshirt sophomore year at Syracuse in 2018 after being diagnosed with testicular cancer in March of that year.

The type of cancer Rex endured is considered rare but is very treatable. He was very open about his diagnosis and inspired others with hope by sharing his journey publicly. He had a 98 percent cure rate diagnosis, attacked his 100 hours of chemotherapy with confidence in his ability to battle. Three weeks into his 10-week treatment protocol he returned to Syracuse for spring practice and threw a 17-yard touchdown pass in the Orange spring game.

Three days later he had a major scare that hammered home the brevity of what he faced despite the odds being in his favor. Rex had an allergic reaction to a mixing agent used in his treatment that had doctors rushing to his side. Later he told his teammates at an SU awards celebration that at that moment he thought his “life was out of my control.”

Rex did return to play the 2018 season, but not at quarterback. He switched positions to tight end and his only game action was on special teams as a wedge blocker on kickoffs.

During his grind to stay involved in football, Rex continued to inspire other patients in Central New York and beyond with his incredible commitment. His story gained national attention and would resurface nationally in 2020.

In Week 2 at Heinz Field in Pittsburgh, Rex was called to take over under center against the Pitt Panthers. On his second snap, Rex snared the shotgun snap, twirled the ball in his hands and let fly a perfect strike downfield to wide receiver Taj Harris perfectly in stride. The 69-yard connection was the first touchdown pass Rex had thrown for Syracuse since his battle with cancer and his first since 2017.

Three long years of euphoria was let loose by Rex in that moment as his wild and emotional celebration was pure unvarnished joy being unleashed. The celebration clip went viral and so did his comeback story and the battle he endured to get to that moment.

Being back in the spotlight allowed Rex to continue to use his platform and share his updated story in order to serve as an inspiration for others. He ended up playing 10 games at quarterback in 2020 including five starts. He threw for more than 1,000 yards with nine touchdowns.


“Rex has been through hell and back. To see him celebrating that touchdown with his teammates, it meant so much to us because we know the process it took to get to that moment. What we think is most admirable about Rex is his perseverance. I think that cancer at a young age like that, and 100 hours of chemotherapy, changes your perspective on a lot of things. You don’t really harbor the negative. You don’t be bitter. You just look forward to what’s next.” – Monica Culpepper

2020 Rare Disease Champion Team: Learn more about Syracuse punter Nolan Cooney using his experience as a rare cancer survivor to inspire hope

Nolan Cooney

University: Syracuse University

Vitals: 6-3, 202 pounds, senior, punter

Quick Hits: Nolan had a rare cancer scare in high school that gave him a different perspective on patience and made waiting four years to become the No. 1 punter for the Orange no problem. The four-time ACC Honor Roll and six-time Syracuse Athletic Director’s Honor Roll selection flourished during his year in the spotlight. A former Vice President for the Syracuse Chapter of Uplifting Athletes and the 2019 recipient of the team’s Jim DaRin Courage Award as a testicular cancer survivor, Nolan earned third-team All ACC honors and was an honorable mention All-American selection from Pro Football Focus. The former walk-on set a single-season program record averaging 44.8 yards per punt in 2020. He led the nation in punt attempts (74) with 24 downed inside the opposing 20-yard line, 25 traveling at least 50 yards and only three finding the end zone for a touchback. Nolan also was the kickoff specialist and, for the third consecutive season, was the kick holder. In addition to his on-field accomplishments, Nolan won the ACC’s Brian Piccolo Award, given annually to the most courageous player in the league.


Elite athletes have this unique drive and mentality that no matter what the challenge in front of them might be, defeat is not an option. When Syracuse punter and NFL prospect Nolan Cooney was diagnosed with a rare form of testicular cancer that spread to his lungs as a junior in high school, in his mind this was just another challenge ripe to be defeated.

The road to a clean cancer scan was never going to be easy, and the 30 chemotherapy treatments Nolan endured over nine weeks took a toll on his body and challenged him mentally. Being a three-sport athlete was a part of his DNA. Sitting around and watching sports instead of playing, battling the side effects of chemo treatments and facing an uncertain future gave Nolan a perspective that helped shape who he is today.

Nolan returned to play basketball later in the season of his junior year in high school after he recovered. And on many fronts, the challenge of his diagnosis and his positive mental attitude allowed him to resume a normal life.

Deep down, though, Nolan knew this experience had changed him. While he was receiving his treatments he received a call from former champion cyclist and testicular cancer survivor Lance Armstrong. He also received a visit from Joe Andruzzi, a former New England Patriot and Super Bowl winning offensive lineman and cancer survivor. Andruzzi provides support to families affected by the disease in the New England area. 

Nolan remembers the impact those moments had on him during those dog days of treatment. And he knew part of his responsibility as a survivor was to pay it forward.

When Nolan arrived at Syracuse as a walk-on, he volunteered to serve in a leadership role for the Syracuse Chapter of Uplifting Athletes. It was an opportunity for him to give back and inspire others in the Rare Disease Community. He served in that role for three years.

More reserved and quiet than most in a college football locker room, Nolan stepped out in 2020 and became a stronger voice and advocate for the rare disease cause. Nolan has been more open with his story about his battle with testicular cancer and uses a podcast he hosts on positive mindset, health and nutrition as a platform to bring additional attention to the cause.

His stellar senior season in 2020, where he averaged a program record 44.8 yards per punt, has made Nolan a bona-fide NFL prospect. He will take his shot in 2021 and plans to use his platform in the run-up to the NFL Draft to continue his mission of raising awareness for the Rare Disease Community.


“Through Uplifting Athletes, I found a connection to the rare disease cause with my own life, as I am a testicular cancer survivor. Using sports, specifically college football, to raise awareness also affords me the opportunity to use my platform to share my story and the importance athletics plays in it.” – Nolan Cooney

Chapter Update: Northwestern finishes off magical year with a victory and three other teams close out 2020 season

Northwestern capped off a memorable 2020 season by winning its fourth consecutive bowl game with a victory over Auburn in the Citrus Bowl. The Big Ten West champions used an offensive explosion that produced the most passing (291) and total yards (457) this season.

Wildcats linebacker Paddy Fisher posted a game-high 12 tackles to become the sixth NU player to clear the career 400-tackle plateau. The last Northwestern player to eclipse 400 was current Wildcats linebackers coach Tim McGaricle (2002-2005).

Northwestern Chapter Vice President, defensive tackle Joe Spivak, recorded his first tackle for a loss and sack of the season. He started the final eight games for the Wildcats and finished the season with 14 tackles.

Clemson: The Tigers’ 125th season came to close at the hands of Ohio State in the Sugar Bowl as part of the College Football Playoff. Clemson finished 10-2 overall, won another ACC title and made its sixth consecutive appearance in the College Football Playoff. It was the first time Ohio State has ever defeated Clemson. Quarterback Trevor Lawrence threw for 400 yards and finished his career 34-2 as the Tigers starting quarterback. Clemson Chapter Vice President, punter Will Spiers, averaged a stellar 47.4 yards on five punts.

Notre Dame: The Fighting Irish defense held No. 1 ranked Alabama to a season-low 31 points, but still fell to the Crimson Tide in the Rose Bowl as part of the College Football Playoff. Notre Dame limited the powerful Alabama offense to nine possessions and surrendered only four touchdowns to a Crimson Tide team that came into the contest averaging nearly 50 points a game. Notre Dame Chapter President, linebacker Drew White, tied for the team lead with a season-high nine tackles. Former ND Chapter leader, tight end Brock Wright, played on offense and was also credited with a tackle.

NC State: After falling behind 13-0 at halftime, the Wolfpack rallied in the second half before coming up short against Kentucky in the Gator Bowl. NC State finished the 2020 season with an 8-4 mark that included four consecutive wins leading into the bowl game. NC State Chapter Vice President, tight end Dylan Autenrieth, had a catch for two yards against the Wildcats. Kentucky linebacker Josh Paschal, a member of the Uplifting Athletes 2019 Rare Disease Champion Team, had four tackles and a half sack against NC State.

2020 Bobby Dodd Coach of the Year: Congratulations to Northwestern head coach Pat Fitzgerald for being named the winner of the 2020 Bobby Dodd Coach of the Year. The Dodd Trophy recognizes excellence in a program on and off the field. The Wildcats won the Big Ten West for the second time in three years, had a record 69 players earn Academic All-Big Ten honors, leads the country in graduation success rate (GSR) at 97 percent and promotes player driven service to others including Uplifting Athletes, Dance Marathon, Special Olympics and Misericordia.