Meet 2020 Uplifting Athletes Young Investigator Draft presented by CSL Behring Collaborative Leadership Award recipient Dr. Benjamin Chan


The Young Investigator Draft is the result of Uplifting Athletes’ ongoing commitment to cultivate resources that accelerate scientific advancements for rare disease treatments and potential cures while facilitating the next generation of rare disease researchers.

To learn more about the 2020 Young Investigator Draft presented by CSL Behring and to purchase tickets click here.

Researcher: Dr. Benjamin Chan

Mentor: Dr. Paul Turner

Young Investigator Institution: Yale University

Education: Dr. Chan spent five years at the University of Utah obtaining his undergraduate degree in Behavioral Biology before obtaining his PhD in Microbiology in 2008. After working at the University of Utah hospital as a scientist, Dr. Chan landed a position in the Turner Lab at Yale University in 2013 and is currently an Associate Research Scientist in the department of Ecology and Evolutionary Biology.  

Research: In the Turner Lab at Yale University, Dr. Chan works on using phage to treat bacterial infections. This is known as phage therapy. Since the discovery of bacteriophages over 100 years ago, there have been numerous attempts at using them in the clinic to treat bacterial infections. A lot of this work took place in the former Soviet Union and was largely ignored by the West as we developed and deployed highly effective (at the time) broad spectrum antibiotics. However, as the effectiveness of these antibiotics decreases, we are once again considering phages as a potential therapeutic. A lot has changed and science has advanced significantly since the initial discovery allowing our team to better understand bacteria-phage interactions which should enable us to deploy them more successfully. For example, we now have the tools to identify what surface expressed proteins or sugars particular phage are using to adsorb to their bacterial hosts. This is a critical piece of information that’s essential when designing a treatment plan. We can also characterize, at the molecular level, the ways in which bacteria evolve resistance to phage infection, allowing us to predict, and capitalize upon, what will happen during the course of therapy.

In Their Words: “When it comes to Paul as a mentor in the lab, what stands out first and foremost is his science. His science is simply amazing. He is very approachable and you can ask him anything. He doesn’t have an ego. Paul is genuinely a friendly and happy guy.”

A native of Seattle who spent most of his life in Salt Lake City, Dr. Chan was interested in being a scientist since he was in kindergarten. When asked if ever considered anything else, Dr. Chan’s simple answer was an emphatic “no”.

“I’m your classic case of one of my parents brought home a microscope when I was very young and it was game over. I was hooked,” Dr. Chan said. “It has always been all about science and medicine for me.”

Research scientists are problem solvers and explorers and usually possess an adventurous spirit when it comes to their work. They have to be great thinkers and detail oriented at the same time, but also not be afraid to fail.

And as they hone their craft and a niche inside the vast world of science and research, working alongside a mentor that brings out the best in them as scientists can be a difference maker.

For young investigator research scientists like Dr. Chan, when he decided to make his move it was all about the lab mentor and the science that was being done in that lab.

For him the lab at the top of his list was Dr. Paul Turner’s at Yale University.

“As a scientist you look around and ask around and talk to people. You put together a list and shop around. It’s a competitive process. Working in Paul’s lab with him was at the top of my list,” said Dr. Chan, who has how many? children and is scheduled to marry his fiancé, Joanna Bingham, in England later this year. “The science being done in his lab is amazing, like I said. But it’s Paul the person that sealed it for me. It was a combination of both the science and the person that brought me to the frozen Northeast from Utah.”

After working in Dr. Turner’s lab for nearly seven years, Dr. Chan has discovered that science is extremely important. But it’s the group of people that Dr. Turner assembles together that is the real difference maker.

“I’ve learned from Paul that you have to have a really nice team around you. The right people really does matter,” Dr. Chan said. “He understands that when you have that right group of people, you can do some really cool work.”Dr. Chan and Dr. Turner were selected for the 2020 Uplifting Athletes’ Young Investigator Draft Collaborative Leadership Award in partnership with Emily’s Entourage. Emily’s Entourage accelerates research and drug development for nonsense mutations of Cystic Fibrosis. By providing critical leadership and coordination, Emily’s Entourage drives high-impact research, cultivates multi-stakeholder collaboration, and facilitates information exchange to speed breakthroughs.

Meet 2020 Uplifting Athletes Young Investigator Draft presented by CSL Behring research grant recipient Dr. Jonathan Whittamore


The Young Investigator Draft presented by CSL Behring is the result of Uplifting Athletes’ ongoing commitment to cultivate resources that accelerate scientific advancements for rare disease treatments and potential cures while facilitating the next generation of rare disease researchers.

To learn more about the 2020 Young Investigator Draft and to purchase tickets click here.

Researcher: Dr. Jonathan Whittamore

Young Investigator Institution: University of Florida

Education: Dr. Whittamore received his Bachelor’s degree in Zoology from John Moores University in Liverpool in 2000 and completed his Master’s in Marine Biology from the University of Wales, Bangor in 2003. He obtained his PhD in comparative and integrative physiology at the University of Exeter in 2009.

Research: Dr. Whittamore’s research is centered on the Primary Hyperoxalurias, a group of rare genetic diseases that cause defects in key enzymes leading to increased oxalate production by the liver.  These conditions result in persistent hyperoxaluria (elevated levels of oxalate in the urine) and, as a consequence, recurrent kidney stone formation. Progressive kidney failure ensues accompanied by severe damage to other organs from the deposition of oxalate. The goal of this project is to understand how this excess oxalate is being transported out of the liver by describing, for the first time, the cellular mechanism(s) responsible and resolving the molecular identity of the proteins involved.

In Their Words: “I didn’t set out to go into biomedical research. When I got the opportunity to go to University I was only focused on what I was interested in. I was always interested in natural history, dinosaurs, sharks etc. I always got along well with biology in school. So I went into zoology when I first went to University. In my final year I had to do a project where you had to do a research element and I absolutely loved it. That started me down a path I’m on today, but I didn’t know it at the time.” – Dr. Jonathan Whittamore

Born and raised in Derby, England, Dr. Whittamore grew up wanting to do the one thing plenty of young lads in the United Kingdom dream of – playing football (soccer) professionally.

Dr. Whittamore tells the story today about his passion for football and how it so consumed him during his teenage years that literally nothing else mattered. Including his education. In his words “school was simply something I had to do so I could play football.”

His passion and love for the game took its toll, though, and he admits his education suffered. The price he paid was steep, but when reality hit and being a professional football player was off the table, Dr. Whittamore went to work.

To say Dr. Whittamore’s path to becoming a highly respected researcher was an unconventional path is a valid statement instead of just a common phrase.

“It wasn’t by design, I can certainly tell you that,” said Dr. Whittamore, who is a naturalized citizen of the United States with a son in middle school. “When I was working on my PhD, I really had this desire to want my work to have more purpose. Up until that point I had been doing what was of interest to me. Where I am today certainly was not by design.”

His narrow focus on football only forced Dr. Whittamore to retake his A Levels – the equivalent of a high school diploma in the United Kingdom – and find a job. Since his father, and his father before him, each had long careers working for Royal Mail, Dr. Whittamore spent two years following in their footsteps.

“I worked at Royal Mail for two years, met a lot of guys who only wanted to work for Royal Mail for a couple years and 10-20 years later they are still there in the same job,” Dr. Whittamore said. “And I saw that and knew I couldn’t do that. There had to be something more for me. That was when I decided to start down my journey in science because it was what I was interested in.”

During his schooling in zoology and marine biology, it was the research part of science that most intrigued and inspired Dr. Whittamore. After seven years in the lab at Exeter obtaining his PhD, he knew it was time to look in a different direction.

He wanted to work with new people, learn new techniques and skills in the lab. After marrying an American, Dr. Whittamore knew his wife was keen on returning to the United States.

Pouring over job openings, Dr. Whittamore was intrigued by the research being conducted in the lab at the University of Florida (UF). So he blindly applied for the job based on the ad without knowing anything about the team at UF led, by now mentor, by Dr. Marguerite Hatch. Dr. Whittamore simply thought he was a good fit.

“I knew nothing of my mentor now. I applied simply based on the ad. I was drawn to the ad and captivated by it,” Dr. Whittamore said. “We use very traditional and old-school techniques, but they are still relevant today and are powerful tools to answer the questions of today. I feel strongly we are helping people and doing a lot of good.”

Dr. Whittamore was nominated for a 2020 Uplifting Athletes’ Young Investigator Draft research grant on behalf of the Oxalosis & Hyperoxaluria Foundation (OHF). The Oxalosis & Hyperoxaluria Foundation (OHF) is dedicated to finding treatments and a cure for all forms of hyperoxaluria. OHF supports thousands of healthcare professionals, patients, and their families, and we aim to share our knowledge so that everyone has accurate information about the advances in this disease. OHF is a donor-funded nonprofit, spending 90 percent of every dollar raised on research and programs for our community.

Meet 2020 Uplifting Athletes Young Investigator Draft presented by CSL Behring research grant recipient Dr. Kathryn Hixson


The Young Investigator Draft presented by CSL Behring is the result of Uplifting Athletes’ ongoing commitment to cultivate resources that accelerate scientific advancements for rare disease treatments and potential cures while facilitating the next generation of rare disease researchers.

Learn more about the 2020 Young Investigator Draft and purchase tickets click here.

Researcher: Dr. Kathryn Hixson

Young Investigator Institution: University of North Carolina at Chapel Hill Catalyst for Rare Diseases

Education: Dr. Hixson graduated cum laude from Brigham Young University (BYU) with a BS in Neuroscience in 2011 and received her PhD in Neuroscience from Boston University School of Medicine in 2019.

Research: Dr. Hixson is studying Malan Syndrome, a rare genetic disease that was identified in 2010. It currently affects 150 patients worldwide with diagnoses occurring so rapidly that it is likely the disease is much less rare than we know. Symptoms include seizures, craniofacial features, musculoskeletal abnormalities and intellectual disability. The only treatments available are merely supportive and treat individual disease symptoms separately due to our poor understanding of what causes the disease. Dr. Hixson’s research intends to reveal, not only what is causing Malan Syndrome, but novel ways to treat it that may ultimately lead to a cure. In order to accomplish this, Dr. Hixson will create a stem cell line with the gene mutation that patients have, then characterize what is disrupted in those cells. Then she will perform a drug screen to find novel therapeutic options that will correct the abnormalities in the stem cells and, hopefully, one day in human patients as well.

In Their Words: “I always liked science growing up. I knew going into college I wanted to be a scientist, but I had not decided on neuroscience at that point. My dad pointed out that neuroscience was a very cool field and was exploding at the time. I took an introduction to neuroscience course and that led me down this path. The other part of it, my two grandfathers suffered from Alzheimer’s Disease and Parkinson Syndrome, so they affected our entire family. So there was also a personal connection aspect of it for me.” – Dr. Kathryn Hixson

Growing up in Logan, Utah, Dr. Hixson always had a love for science and knew fairly early that was the career path she wanted to pursue.

What the competitive swimmer growing up didn’t know was whether she wanted to take the medical doctor route or PhD path and work in a research lab.

It was a toss-up going into her freshman year at BYU, but time was on her side. Then Dr. Hixson attended a freshman orientation session and it illuminated the path she really wanted to pursue.

“It was my first week of college, and a professor that was running the orientation said the perception is PhD scientists don’t have as much of an impact because they aren’t at the bedside dealing with the diseases,” said Dr. Hixson, who is married with a 4-year-old son and their second child, a daughter, is due in April. “I remember him telling us that PhD scientists and the work they are doing is helping tens of thousands. That made me understand better the path I wanted to follow.”

After graduating from BYU, where she did a mission trip to Argentina for 18 months, Dr. Hixson set out to pursue her PhD in neuroscience.

Dr. Hixson’s passion for the brain was driven by her family being impacted by each of her grandfathers battling a neurological disorder and, generally, the complexity of the brain itself.

And that led her to Boston – a city she had always dreamed about living in – and an investment of eight years obtaining her PhD from the Boston School of Medicine.

“My Dad (Russell Price) kind of suggesting neuroscience started the clock ticking,” said Dr. Hixson, who is one of five children, is a passionate cake decorator and enjoys competing in triathletes. “By the time I was taking the introduction course, I knew this was what I was going to do. It was an amazing organ that controls everything that we do. The range of the brain was fascinating to me.

“Today we have so many more treatments and we can do so much to limit the impact of neurological disorders. We are able to make a patients’ lifestyle better. The old thinking for neurological disorders was to help them out until they eventually die. That seems like a tragic diagnosis for me to hear. We are learning more about understanding the diseases that are mostly understood and can treat them.”

Dr. Hixson was nominated for a 2020 Uplifting Athletes’ Young Investigator Draft research grant on behalf of the Malan Syndrome Foundation. The Malan Syndrome Foundation was co-founded in 2018 by four moms looking to raise awareness, grow the community and increase understanding of Malan syndrome. The Malan Syndrome Foundation provides a broad network of support to Malan patients, their family members, caregivers and healthcare professionals through the Foundation’s website, social media platforms, newsletters and family conferences. The Foundation is committed to identifying the best research approaches for improved patient care so that all affected individuals have the opportunities and support necessary for full, happy lives.

Meet 2020 Uplifting Athletes Young Investigator Draft presented by CSL Behring research grant recipient Dr. Joshua Brandstadter


The Young Investigator Draft presented by CSL Behring is the result of Uplifting Athletes’ ongoing commitment to cultivate resources that accelerate scientific advancements for rare disease treatments and potential cures while facilitating the next generation of rare disease researchers.

To learn more about the 2020 Young Investigator Draft and to purchase tickets click here.

Researcher: Dr. Joshua Brandstadter

Young Investigator Institution: University of Pennsylvania

Education: Dr. Brandstadter did his undergraduate work at Wesleyan University (Connecticut) and graduated in 2006 with a double major in Molecular Biology and BioChemistry; obtained his Masters Degree in Immunology from Oxford University in 2007 and earned his MD/PhD from Duke Medical School in 2015. Dr. Brandstadter did his residency in general internal medicine at University of Pennsylvania from 2015-2017 and as a physician-scientist he is currently in the third-year of his hematology/oncology fellowship at Penn.

Research: Dr. Brandstadter is currently doing research associated with Castleman Disease (CD) a rare, life-threatening illness that is very poorly understood. Patients become very sick with whole-body inflammation and multi-organ failure that can quickly require ICU-level care. It often looks like CD patients have lymphoma, a cancer of the white blood cells of the immune system, with large lymph nodes that appear brightly on PET scans. However, unlike lymphoma, no cancer can be found in any type of white blood cell in CD, stumping doctors as to what could be causing the disease. Dr. Brandstadter proposes that the cells of the lymph node itself (“stromal cells”) might form inappropriate growths (similar to a polyp in the colon) that cause the characteristic large lymph nodes and whole-body inflammation seen in the disease. To do this work, he has developed techniques to study these cells in new ways to uncover their role in CD. Dr. Brandstadter is currently working to establish independence as a physician-scientist, a critical phase where his ability to establish an independent career studying CD will depend upon funding support and critical insights gained from pilot grants such as the Uplifting Athletes Young Investigator Draft. 

In Their Words: “Medicine helps people in the here and now. You are helping people in a concrete way and you are helping them during a scary time in their lives. You are able to give them some concrete steps forward and give them the best outcome possible. Science allows you to re-define what possible is and possibly change the rules about how it’s looked at. You are able to use science to possibly change the big picture for people. Science is more of a long haul toward really trying to change how the future looks.” – Dr. Joshua Brandstadter

To say Dr. Brandstadter was born into science and education is not a stretch. The father of two, who married his wife Katelin in 2013 after they met in Medical School at Duke, Dr. Brandstadter grew up in Port Washington on Long Island with science and education as modeled behavior.

His parents, Martin and Bonnie, had almost 80 years combined as school teachers in the New York City public schools before retiring.

During high school, an internship at a biotech lab gave Dr. Brandstadter invaluable exposure to the career path he was going to pursue. Science was the leader in the clubhouse when he enrolled in college.

“I’ve been in and out of labs since I was a high school student,” said Dr. Brandstadter, who grew up playing ice hockey and is a passionate New York Islanders fan. “I’ve always been interested in science and science research … learning new things. I’ve also always loved learning and it’s always been important. Learning has always been important to me.”

Although science was the direction he was leaning, Dr. Brandstadter still wasn’t ready to fully commit to that path as his definitive future and that is why he went to a liberal arts college for his undergraduate work.

During his time at Wesleyan University he studied economics and also took a stab at journalism – first as a writer, then eventually as the editor of the school newspaper.

“I definitely looked at other things. That’s why I went to a liberal arts college, to look at other things,” Dr. Brandstadter said. “I tested other things and gave them a real try, but science was the first love for me.

“It wasn’t until college where I had an opportunity to volunteer at a hospice and was dealing with end-of-life cancer patients that I discovered my passion for helping patients.”

That is why today, Dr. Brandstadter is a physician-scientist. His love of science and passion to help others as a physician drives him.

Dr. Brandstadter was nominated for a 2020 Uplifting Athletes’ Young Investigator Draft research grant on behalf of the Castleman’s Disease Collaborative Network (CDCN). The Castleman Disease Collaborative Network (CDCN) was founded in 2012 by Drs. David Fajgenbaum and Frits van Rhee out of the urgent need to advance research and improve patient care for Castleman disease. The CDCN is patient driven and patient focused and its novel and innovative approach called the “Collaborative Network Approach” has become a blueprint for rare disease research, inspiring the Chan Zuckerberg Initiative to selected the CDCN as a leading patient-driven rare disease model and partner to spread our approach to other rare diseases.

Meet 2020 Uplifting Athletes Young Investigator Draft presented by CSL Behring research grant recipient Dr. Cheng Cheng


The Young Investigator Draft presented by CSL Behring is the result of Uplifting Athletes’ ongoing commitment to cultivate resources that accelerate scientific advancements for rare disease treatments and potential cures while facilitating the next generation of rare disease researchers.

To learn more about the 2020 Young Investigator Draft and to purchase tickets click here.

Researcher: Dr. Cheng Cheng

Young Investigator Institution: University of California, Irvine

Education: Dr. Cheng received her undergraduate degree from Knox College with a BA in Biology and Chemistry in 2013 and obtained her PhD in Developmental Biology from Washington University in 2018. Currently, Dr. Cheng works in the laboratory of Dr. Kimonis at UC-Irvine doing postdoctoral research.

Research: Dr. Cheng is conducting her PhD studies on the pathogenesis of Borjeson-Forssman-Leymann syndrome (BFLS), a rare syndromic form of X-linked intellectual disability. Using CRISPR/Cas9 technology, her research team has successfully generated and characterized the first rodent model of BFLS. This work advances understanding of the cellular and molecular underpinnings of BFLS and lays the foundation for potential treatments for neurodevelopmental disorders of cognition. In the Kimonis lab as a postdoctoral fellow, Dr. Cheng is exploring potential therapeutic strategies for VCP multisystem proteinopathy, a rare neuromuscular disorder. In particular, she is using small inhibitors to target the gain of function mutations of VCP protein in rodents and other cell models of the VCP disease. She is gaining experience in translational research in drug discovery by working with not only research scientists, but also clinicians, patients, pharmaceutical companies and patient advocacy groups. Her interactions with a wide variety of groups has taught Dr. Cheng about rare neuromuscular diseases from different perspectives, allowing her to effectively communicate science to a broad audience.

In Their Words: “Growing up in China, they have an interesting system. In high school you have to choose a path focused on either science or art classes. At the time I had to choose, I was pretty good at science stuff. So my high school was very science focused. When I came to the United States, I was inspired by my professors in their passion for research and the research they were doing. And that inspired me to look harder at research and I enjoy it very much.” – Dr. Cheng Cheng

Originally from the Citroen Province in China, Dr. Cheng came to the United States in 2009 to advance her love for science as a college student.

When she came to the U.S., Dr. Cheng wasn’t exactly sure what her path would be in science, but she was pretty sure she would find something that moved and inspired her.

You could say being a research scientist found Dr. Cheng, instead of the other way around.

“When I came to the U.S. I wasn’t sure exactly what in science I would do, but I felt strongly it was the right direction for me,” said Dr. Cheng, who has been married for three years and has a 2-year-old daughter and a 3-month old son. “I was so inspired by my professors and their passion for research and the research they were doing. That inspired me to look more closely at research.”

Focused on learning the techniques and details of being a research scientist, Dr. Cheng was drawn to neuroscience while working on her PhD. The chairman of the neuroscience at Washington University was studying rare intellectual neuroscience and Dr. Cheng was drawn to the work.

“When I think about a disease, there are two aspects. There is the science aspect and the humanity aspect,” said Dr. Cheng, who has traveled extensively and lists scaling Mount Kilimanjaro in Tanzania as one of her top accomplishments. “You learn something different from every patient. The science has a process, but you have to learn about the disease from a patient. That is very important to me.”

After more than a half decade in labs focused on honing her skills as a research scientist, it is meeting patients and understanding the value of translational science that continues to inspire Dr. Cheng.

The first time Dr. Cheng met an actual patient associated with the research she is working on, she was moved to tears. 

Because of her experience and commitment, last year Dr. Cheng was part of the inaugural Cure VCP Disease Patient and Caregiver Conference in St. Louis.

“The work we are doing is for patients with a very rare disease,” Dr. Cheng said. “We are doing more translational research and get to interact with the patient community. That is very important to me.”

Dr. Cheng was nominated for a 2020 Uplifting Athletes’ Young Investigator Draft research grant on behalf of Cure VCP Disease. Formed in 2018, Cure VCP Disease was formed to drive efforts to cure diseases related to mutations of the Valosin Containing Protein gene by providing global education and awareness of VCP diseases to doctors, researchers, patients, caregivers, investors and the general public.

Young Investigator Research Grant produces exciting and award winning results for rare disease patients


2018 Young Investigator Draft grant recipient Aimee Layton (left).

Two years ago, when Uplifting Athletes handed out rare disease research grants at its first Young Investigator Draft presented by CSL Behring, Dr. Aimee Layton from Columbia University was one of the recipients in the first draft class.

In the nearly 18 months since the execution of that rare disease research grant, Dr. Layton used a portion of this early stage research funding to institute a fresh approach to an already existing program for extremely sick patients battling Cystic Fibrosis (CF) – a rare genetic disorder that affects multiple organ systems.

Dr. Layton came up with an idea to use an app on your phone to encourage patients to participate in an eight week exercise program. The main focus was a new take on a pre-lung transplant pulmonary program that increased the patient’s chances of a stronger recovery following the transplant.

“Of the patients who completed the study, one told her transplant doctor that the work ‘changed my life.’ He hugged me when he told me this,” Dr. Layton said. “So thank you to Uplifting Athletes, because this couldn’t have been done without the Young Investigator Draft Grant.

“These patients are very sick so they can’t go to a gym like most people but they could use the app at home. What gave me the idea to use an app was patients don’t want to be treated like they are sick. They just want to be treated like everyone else. In the medical field we sometimes forget to not always focus on the disease, but instead focus on the people.”

Once patients started signing up for the new pulmonary program, something unusual started happening. Not only were most patients completing the eight-week exercise program, some were even signing up to pay for the app on their own so they could continue.

“It’s huge that they want to exercise and help themselves. It’s hard to convince them to do this because they are afraid to exercise,” Dr. Layton said. “The instructors on the app are very motivating and it motivates the patients. Exercise has to be fun because, by nature, it’s painful. And this made it entertaining for them.”

All the patients were not finished with the program, and a few were still in the pipeline to get started, but Dr. Layton and her team turned the scientific data gathered from the study over to Andrew Irwin, one of the medical students in the Columbia lab. He was the first author for the research side of this new approach to a program that already existed.

Irwin, a second-year medical student who studied kinesiology as an undergraduate, spent three years as a personal trainer and obtained a masters degree in Global Health, assembled all the scientific research at his disposal for a presentation at the American College of Sports Medicine (ACSM) regional chapter in New York as part of the research competition.

Andrew Irwin (left) and Dr. Aimee Layton at the American College of Sports Medicine (ASCM) regional chapter research competition.

The data used for the competition was still preliminary as the program is still not complete. So Dr. Layton made sure expectations were tempered for how the study would fair in a competitive research environment.

Irwin presented his study at the regional conference and the judges were impressed enough with preliminary data to award the Columbia University study first place.

“I didn’t have too high of hopes at the regional level because all the patients had not finished the new program, so our report was only based on only preliminary results,” Dr. Layton said. “The judges went crazy for it, though. So we have a few more patients we need to get through the program in the next two months and then we can complete this study and go from there. This is all very exciting for everyone involved.”

Irwin will gather all the remaining data possible to present a completed study at the ACSM’s National Conference President’s Cup research competition in May.

Helping rare disease patients with CF increase their chances of a recovery after their lung transplant is always the goal.  Finding a new approach to an already existing program that is motivating these patients to complete, and in some cases continue on their own, is pivotal. Plus winning a competition based on the initial scientific data from the program shows the potential of a research team with the funding to try something different. 

If you would like to meet the 2020 Young Investigator Draft Class, Uplifting Athletes will host its 3rd Annual Young Investigator Draft presented by CSL Behring on Saturday, March 7th at Lincoln Financial Field, home of the Philadelphia Eagles. To attend the 2020 Young Investigator Draft, purchase your tickets here.

21 NFL Prospects join 2020 Reps For Rare Diseases campaign during NFL Combine


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

Reps For Rare Diseases has been used as a way for 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.

Since its inception in 2015, more than 100 players have participated in this campaign through either the NFL Combine or NFL Pro Day workouts.

This year Uplifting Athletes currently has 21 players who chose to participate in Reps For Rare Diseases 2020 at the NFL Combine including: Grayland Arnold, JaMycal Hasty, Denzel Mims, Clay Johnston, James Lynch and Chris Miller from Baylor, Davion Taylor from Colorado, Jalen Elliott, Alohi Gilman, Tony Jones Jr., Cole Kmet, Chris Finke and Julian Okwara from Notre Dame, Juwan Johnson from Oregon, Rob Windsor from Penn State, Kevin Davidson from Princeton, Sterling Hofrichter and Kendall Coleman from Syracuse, Reggie Robinson and Trevis Gipson from Tulsa and Shaun Bradley from Temple.

“During Combine and Pro Day training, so much time and energy is focused by these young men on achieving their dreams of playing in the NFL,” former NFL player and Uplifting Athletes’ Chapter Success Manager Levi Norwood said. “It is amazing to see so many NFL hopefuls realize, especially during this tiring and grueling process, how impactful their platform can be. We are honored they chose to stand alongside Uplifting Athletes and the Rare Disease Community.” 

Fans and supporters can pledge towards the performance of any one of our NFL Combine participants this year and help Uplifting Athletes tackle rare diseases.

Visit the Uplifting Athletes Reps For Rare Diseases 2020 team landing page, choose your favorite player and make your pledge today.

Horizon Therapeutics plc and Uplifting Athletes announced a new partnership for the 2020 Reps for Rare Diseases campaign. Horizon will match donations up to $35,000 through its #RAREis program, which is dedicated to providing individuals living with rare disease and families access to resources that connect, inform and educate as they navigate their daily lives.

“Thank you to all the athletes participating in Reps For Rare Diseases and good luck as you continue your football journey,” Uplifting Athletes Director of Sports Impact and NFL veteran Brett Brackett said. “This group of athletes displays the empathy and character that helps them stand out amongst their peers. Any NFL team would be lucky to have one of these men representing their organization.”

The proceeds from the 2020 Reps For Rare Diseases campaign support the mission of Uplifting Athletes and its charitable programs: Rare Disease Awareness, Rare Disease Research, Uplifting Experiences and Uplifting Leaders.

Meet Uplifting Athletes 2019 Rare Disease Champion Team member Antwan Dixon from Kent State University


Starting this season, the focus of the Rare Disease Champion Award shifted to a team concept in order to provide a platform to recognize all the qualified leaders that have made a significant and lasting impact on the Rare Disease Community. The Rare Disease Champion Team ensures all the inspiring rare disease stories of qualified leaders in college football are shared and celebrated. Uplifting Athletes will honor the 2019 Rare Disease Champion Team at the Maxwell Football Club Awards Gala in Atlantic City and at the Uplifting Athletes Young Investigator Draft in Philadelphia March 6 and 7, respectively.

Antwan Dixon

University: Kent State University

Vitals: 5-8, 180-pound, redshirt junior, wide receiver

Quick Hits: The native of Florida was diagnosed with the rare blood disorder aplastic anemia in high school, but continued to play football until 2016 when his rare diagnosis took a turn for the worse. He was forced to leave school, received a life-saving bone marrow transplant from his father and spent nearly 36 months away from the game before he was cleared to return in 2018. Antwan has appeared in every game the last two seasons for Kent State and was inspired to use his voice and platform to help others.  So, he took a leadership role and started the Kent State Chapter of Uplifting Athletes. During his comeback season in 2018, Antwan was recognized as a Mayo Clinic Comeback Player of the Year and the Columbus Touchdown Club Male Athlete of the Year.

INSIDE THE STORY

Antwan is adamant about how his battles with the rare blood disorder, aplastic anemia, turned his life upside down.

He was diagnosed with the rare disease in high school, but it wasn’t until after his freshman year in college that his health took a serious downward spiral and became critical and life threatening.

Antwan loved playing football and was motivated to be the very best at his craft. He remained a very committed and focused athlete who has NFL dreams and aspirations.

During his 30 months away from Kent State, while battling for his life, Antwan realized he was lost in his day-to-day world and blinded by his ambitions around football.   This is when he discovered a whole other person he had no idea existed.

His relationship with his father was always solid. And it became an even stronger bond when his father donated his bone marrow for the life-saving transplant Antwan needed. But during his lowest points physically, he discovered a new-found bond with his mom and brother that would never have developed had he not taken a sudden and drastic turn for the worse.

“Getting sick was such a blessing for me. I saw life from a different standpoint. I’ve made so many life memories since I got sick,” Antwan said. “I built a better relationship with my little brother. We were always good, but we were not tight until I got sick. He saw life differently … I saw life from a different standpoint. Same with my Mom. I was always tight with my Dad, but my Mom was a rock for me. Now we are super tight, too. Out of all the struggles I went through came a new life.”

And a new perspective for Antwan. During his two years away from Kent State and playing football, getting healthy and back on the field was a very powerful motivator. It was the fuel that drove him. At the same time, though, Antwan also discovered being a football player had consumed his identity.

He still has the dream to play in the NFL and is driven to take his very best shot. But that’s just one facet of Antwan the person.

Inspired by his high school guidance counselor, Antwan wants to mentor kids in the future. He enjoys serving and helping others by giving back. Not only is he involved with Uplifting Athletes, but he also visits an elementary school in town to spend time with the kids to serve as an example and mentor. He volunteers with Habitat For Humanity and tries to take advantage of every community service opportunity presented to the football team.

“Football is not my Plan A. I’ve always had a dream of playing in the NFL. I’m not giving up that dream. But there are a lot of things I want to do to help people in this world,” Antwan said. “I’m coming back to school to get my masters degree in counseling. I want to help other people. That motivates me. Whether its kids, people with blood disorders or cancer … whatever. I want to help people who are struggling.”

THE RARE JOURNEY

In 2013, after his sophomore year of high school, Antwan knew something wasn’t right. He struggled physically during track season and his originally diagnosed sinus infection was not going away.

Further tests revealed the three-sport athlete who was a star on the football field had aplastic anemia – a rare autoimmune disease in which the body fails to produce blood cells in sufficient numbers. Blood cells are produced in the bone marrow by stem cells that reside there. Aplastic anaemia causes a deficiency of all blood cell types: red blood cells, white blood cells, and platelets.

His initial treatment protocol was working and despite missing his junior season of football, he returned to play basketball and run track. And Antwan played all three sports his senior year.

He received a scholarship offer to Kent State University and, once he arrived on campus in Ohio, was an impact player right away as a true freshman.

Following his first collegiate season in 2015, Antwan had a big-time setback and fell very ill again so he left Ohio and returned home to Florida. His doctors put him on the same treatment protocol that was successful the first time. Only this time it didn’t work.

Antwan needed a life-saving bone marrow transplant to survive. He lost nearly 50 pounds, spent almost all of 2017 in and out of hospitals before his father, Anthony, was matched and Antwan received his transplant.

After nearly 30 months away from Kent State, Antwan returned to school, but the scholarship offer that his head coach guaranteed would be waiting for him was off the table. The university had made a change and when Antwan returned to Ohio in early 2018, the entire coaching staff was new.

He would be given an opportunity to prove himself, but there were no guarantees of a scholarship. That’s all Antwan needed to hear. After being cleared by four doctors to make a return to the field, Antwan not only earned his scholarship back, he became a starting wide receiver right away.

In his first game back after missing the entire 2016 and 2017 seasons, Antwan caught a touchdown pass for the Golden Flashes. And he has played in every single game since and played a major role in Kent State winning its first bowl game in school history to close out a memorable 2019 season.

Right now Antwan is healthy and strong. But he knows his battle with aplastic anemia is not a done deal. The rare disease could return at any time.

WHAT THEY SAID“Being a survivor means beating the odds. There’s not a big chunk of people that survive this blood disorder. There’s not a lot of people who make it out of my hometown. Just to be able to survive the odds and be different. That’s what being a survivor means to me. My mom put a Superman “S” in front of it because she says I’m her Superhero. Being a survivor has a very special meaning to me for sure.” – Antwan Dixon

Meet Uplifting Athletes 2019 Rare Disease Champion Team member Sam Heckel from Syracuse University


Starting this season, the focus of the Rare Disease Champion Award shifted to a team concept in order to provide a platform to recognize all the qualified leaders that have made a significant and lasting impact on the Rare Disease Community. The Rare Disease Champion Team ensures all the inspiring rare disease stories of qualified leaders in college football are shared and celebrated. Uplifting Athletes will honor the 2019 Rare Disease Champion Team at the Maxwell Football Club Awards Gala in Atlantic City and at the Uplifting Athletes Young Investigator Draft in Philadelphia March 6 and 7, respectively.

Sam Heckel

University: Syracuse University

Vitals: 6-4, 280-pound, redshirt junior, offensive line

Quick Hits: A native of Wisconsin, Sam lives with congenital thrombotic thrombocytopenic purpura (TTP), a rare blood disorder that does not allow for the production of the ADAMTS13 enzyme, which breaks down large proteins. In order to help his body manage this rare disease, he must undergo 14-20 hours of plasmatherapy every two weeks, including during the football season. When he arrived on campus, Sam learned about the strong tradition of leadership within the Syracuse Chapter of Uplifting Athletes and, being a rare disease patient himself, the cause had purpose and special meaning to him. He attended the Leadership Development Conference in 2018 and 2019 and has been the Syracuse Chapter President the past two years. A full-time starter in 2017 on the Orange offensive line, Sam rotated as the sixth man in 2018 and played in every game. This season he earned the job as the starting center before injuries forced him to the sideline early in the year.

INSIDE THE STORY

From the time he nearly died while in elementary school because doctors struggled to diagnose his rare disease, Sam has faced long odds as an athlete.

His TPP diagnosis would require monthly treatments for the rest of his life.  At one point he wasn’t sure doctors would even allow him to play contact sports and Sam was always balancing his medical condition with being an elite athlete.

His dream to be a Division 1 college football player drove Sam on the field, in the classroom and at the hospital. With the help of a strong support team, led by his family, a scholarship to Syracuse allowed him to realize his dream.

The demands of being a student-athlete kept Sam inside that bubble of structure and routines he already was familiar with. Practices, workouts, meetings, classes and studying – the routine of it all was very comfortable to Sam.

“It’s almost a miracle that I got to be a college football player and am living my dream,” Sam said. “All throughout my life I’ve had to rely on other people … my parents, doctors, trainers. Whenever I wanted to do something, I had to rely on other people so much.”

It took a strong and dedicated support team around Sam just to make it to Syracuse, and once that circle of trust expanded in college, it was easy for him to find success.

He was a starter sooner than later for the Orange along the offensive line. Sam filled in at a couple spots up front in 2018 and became an experienced veteran. Coming out of camp prior to the 2019 season he was named the starting center. Once again Sam overcame the odds and was poised to take that next step as a football player.

In the first game of the season, Sam suffered his third concussion in 13 months. And the odds were simply too stacked against him with three head injuries in such a short period of time.

He worked through the recovery protocol as instructed, continued to stay involved with the team and held out hope of once again stepping on the field inside the dome at Syracuse to play the game he dearly loves.

The biggest challenge in his life, overcoming his rare blood disorder to play football, didn’t keep him off the field. Three concussions did, though.

Sam was medically disqualified from ever playing football again following the 2019 season. It was a sudden end he admits, but also said it took him about a minute to accept the diagnosis.

“Being a collegiate athlete, everyone knows it’s going to come to an end. I just didn’t know it was last season. The suddenness of it, that was the harder part for me,” Sam said. “It was a difficult transition for sure, having that taken away from you. I wasn’t used to being a non-athlete.”

Sam is still adjusting to life as a student instead of a student-athlete. He plans to remain involved with the team, helping out the younger players and doing what he can to make a positive contribution to the football team. It’s what he worked so hard to do on the field. Now he’s re-directing that same passion and energy in another direction.

Despite being medically disqualified, Sam will remain on scholarship at Syracuse. He will receive his undergraduate degree in the spring, stay involved with the team in 2020 and begin work on his Master’s degree.

“I still feel like I’m still trying to grasp who I am outside of being a football player,” Sam said. “I’m figuring out it’s all about re-directing your energy as a person. Now I can re-direct my energy in different directions. I have time, and I get to choose a little more what I had to put my energy toward.

“I’m more independent and rely on myself more, and I’m enjoying it. Football and Syracuse gave me everything I ever needed and wanted. I’m so grateful for that. That’s why I feel I have to stay involved and give back.”

THE RARE JOURNEY

Sam was born with thrombotic thrombocytopenic purpura (TTP), a rare blood disorder that does not allow for the production of the ADAMTS13 enzyme, which breaks down large proteins.

Early in his life, obtaining an accurate diagnosis was difficult and once doctors were able to pinpoint his rare disease, coming up with a functional treatment protocol proved tricky as well.

For most of his life, Sam received 14-20 hours of plasmatherapy every three weeks. It was a day-long process that also came with a couple days of recovery to feel normal. Despite nearly dying when he was in elementary school, Sam’s treatment allows him to live a normal life.

He was a star offensive lineman during his high school days at Waukesha West in Wisconsin and that landed him a scholarship offer from Syracuse.

Playing major college football was always the pie-in-the-sky dream for Sam and getting recruited to upstate New York allowed him to fulfill that life-long goal.

As a kid growing up, despite his rare blood disorder, Sam wanted to be on a level playing field with his peers. He didn’t want to be known as the football player who also had a rare disease. So he was extremely hesitant about sharing his journey.

That changed when he arrived at Syracuse.

Once on campus, Sam learned about the strong tradition of leadership within the Syracuse Chapter of Uplifting Athletes and, being a rare disease patient himself, the cause had purpose and special meaning to him.

Still reluctant to talk about his rare diagnosis because he preferred to let his play on the field speak for itself, Sam soon discovered he had a story to share that needed to be shared. Inspired by his work as a leader of the Syracuse Chapter, Sam learned his voice is strong and his platform as a college football athlete is significant.

WHAT THEY SAID

“I feel like with the position I was in with Uplifting Athletes, I realized there are some kids out there right now that are in the same shoes I was in growing up. And if what I went through can help them … give them some hope in any way and let them know they can still have hope no matter what they are going through, they need to know that. You can’t let a health issue determine what you are going to do with the rest of your life. I know the Rare Disease Community doesn’t have a lot of athletes out there, and I’m one of them. So I had to do what I could to help.” – Sam Heckel

Meet Uplifting Athletes 2019 Rare Disease Champion Team member Josh Paschal from University of Kentucky


Starting this season, the focus of the Rare Disease Champion Award shifted to a team concept in order to provide a platform to recognize all the qualified leaders that have made a significant and lasting impact on the Rare Disease Community. The Rare Disease Champion Team ensures all the inspiring rare disease stories of qualified leaders in college football are shared and celebrated. Uplifting Athletes will honor the 2019 Rare Disease Champion Team at the Maxwell Football Club Awards Gala in Atlantic City and at the Uplifting Athletes Young Investigator Draft in Philadelphia March 6 and 7, respectively.

Josh Paschal

University: University of Kentucky

Vitals: 6-3, 285-pound, redshirt junior, defensive end

Quick Hits: Diagnosed with a rare malignant melanoma on the bottom of his right foot in July of 2018, the Wildcats’ defensive standout faced a new battle. Josh endured four surgeries and a year-long treatment protocol of monthly immunotherapy treatments. He missed most of the 2018 season, but he found the strength to return for the final three games. The guy teammates call the “heartbeat of the team” and who was elected team captain by his peers completed his treatments in August of 2019 and was a full-time starter last season.

INSIDE THE STORY

Before he knew anything about what was going on in his foot, before he learned of his diagnosis with a rare malignant melanoma, the University of Kentucky defensive standout was already exploring a new part of his life.

Josh was becoming fully in touch with his spiritual side absent of a life crisis. He found strength and purpose in being a believer.

Shortly before finding out the nagging stinging he noticed in his foot was a serious problem, Josh made a commitment to turn his life over to Christ.

Now on the other side of his diagnosis, back to playing the game he loves for the Kentucky Wildcats and chasing his NFL dream, Josh knows the timing of his faith commitment was no coincidence.

“It was only a couple months before my diagnosis that I made the decision to turn my life over to Christ,” Josh said. “I just remember hearing a testimony about how the hardest thing we can do as believers is giving up ourselves wholly to Christ. After that was the first time I put my full trust in him.

“Then I was told I had cancer. I believed I would get through it, though. I knew it was something that to give me an opportunity to share his Kingdom.”

Josh credits his faith with giving him the strength to keep everything that was going on with his diagnosis in perspective. He battled through several surgeries and setbacks trusting the plan was not his own, but rather God’s plan for him.

And it changed him on several fronts. He became keenly aware of how much emphasis he was putting on being a football player. His perspective on the game and how he saw life altered.

Fortunately when he returned to the field, he was the same player as before his diagnosis. He just saw and approached almost everything he did with a slightly different lens.

“Before all this, I wasn’t the type of guy to share much. Once I had football taken away from me, my love for the game changed. I almost had it taken away from me, and that’s something I never experienced,” Josh said. “When it came back it was the same in many ways, but also very different. I appreciate getting up early to work out, doing extra drills and sprints. I look at film and realize how far I’ve come along on the journey. We look at big picture a lot as players, but I now enjoy the journey of each day.”

THE RARE JOURNEY

Late in 2017 and into the early part of 2018, Josh noticed a small spot on the bottom of his foot. He told the University of Kentucky trainers about it and they told Josh they would keep an eye on it over the next couple of months.

The pain wasn’t obvious. Occasionally, when he would run and hit the right spot with his foot, he would notice a little sting. In the life of an elite football athlete, a small spot on the bottom of your foot is not real cause for concern.

During the summer of 2018 – prior to Josh’s redshirt sophomore season – he was sent to see a podiatrist about the spot on his foot that wasn’t going away. The podiatrist sent him to a dermatologist who removed the spot surgically and told Josh he would have it tested.

The only thought going through Josh’s mind at the time was how fast can he get out of the walking boot he was in and to return to summer workouts full-time.

When he returned to see the dermatologist for his follow-up and hopefully to remove the walking boot, the news was not good.

He was diagnosed with a malignant melanoma in his foot and it was deep enough that the doctors were concerned about it traveling to other parts of his body.

“When I first found out I was shocked,” Josh said. “I was all excited for the follow-up appointment to get out of my walking boot and go back to work.”

Football was immediately put on hold that August day. He quickly met his oncologist and started monthly immunotherapy treatments that would take a full year to complete.

And he had follow-up surgeries in order to make sure the melanoma had not spread. Josh had procedures on his groin, shin and another one on his foot to be safe.

“The most consistent thought (in my head) I had was not to trust my plan and trust God’s plan,” Josh said. My family, parents, sister and brother, they all rallied around me and kept me strong. What went through my head the most was not to be so worried about my plan but to follow God’s plan.”

As a testament to his determination, Josh made a comeback before the end of the 2018 season – only three months after his diagnosis. He played in Kentucky’s final three games and was named Southeastern Conference (SEC) Co-Defensive Player of the Week following the game against Middle Tennessee.

He continued his monthly treatments throughout the offseason and just prior to the 2019 season he completed his treatment protocol.

Josh started 13 games for the Wildcats this past season, notching 34 tackles, 9.5 tackles for a loss, 8.5 sacks, 3 pass break-ups and forced four fumbles.

“Coming back (in 2019) and going through the season, I noticed there was a time before this where I would say I was grateful for everything. But now I know what that really means,” Josh said. “I was so humbled by the small things. I believe going through this is a big part of my journey. It’s helping me connect with other people I never would have talked to. I get to speak at different events and share my testimony. We are here to serve others and I believe that’s what I’m doing when I step on the field.”

WHAT THEY SAID

“When you go through something like that, there are a lot of thoughts racing through your head. You don’t think about who is going to be there for you. But you learn all those thoughts in your head and who’s going to be there for you go hand in hand. It surprised me, but at the same time it didn’t. Because when I look back at it, I see a lot of family. I never felt alone.” – Josh Paschal