Being a rare disease advocate becomes more personal for Kathi Luis


As the Special Projects Director at the Amyloidosis Foundation Kathi Luis is invested in the rare disease patients, families and caregivers that her nonprofit serves.

She is a dedicated and committed advocate for the Rare Disease Community.

The Amyloidosis Foundation, like most single rare disease patient focused organizations, is powered by a small staff. Kathi has one job title, but she commonly refers to herself as a “Jill of all trades.”

Dealing with the ongoing COVID-19 pandemic has made 2020 a very different year for everyone. Unfortunately for Kathi, the pandemic is not the only thing that has complicated her world lately.

Professionally, when your goal every single day is to help others and do what you can to make their lives better, the challenges of the pandemic make the job a little tougher.

What has added to Kathi’s perspective, is also enduring her own personal battle with a recently diagnosed case of heart failure, unsure exactly of the underlying cause. And like the rare disease patients she serves, the pandemic has impacted her access to treatment and answers. 

“It took me six months to get my diagnosis. At first I was so relieved and I’m not afraid to say I cried because I was relieved to have some kind of answer. I was no longer afraid of my shortness of breath and all the other symptoms I was experiencing,” Kathi said. “There’s certain medications I need that we have been concerned about getting and I can’t get my appointments scheduled because of COVID-19.  

“I was supposed to have an appointment one day after my state, Michigan, shut down. They are just adjusting my medications and I’ve had some Telehealth appointments. Everyone is so far behind. I’m scheduled, but it probably won’t be until August or September until I get an appointment.” 

Kathi’s diagnostic journey includes all the familiar challenges – access to care, worries about symptoms, adjustments in medications, difficulty getting answers when it comes to a diagnosis – that rare disease patients face. These very challenges are what Kathi works to overcome as a rare disease patient advocate.

Now it has become a more personal part of her journey.

“I now have an even better understanding of what my patients are talking about on so many fronts,” Kathi said. “It’s been something the last six months is the best way to put it. We have rare disease patients we know are crying out all around the world who are looking for help.”

Having gained a different perspective and understanding from her personal journey has only motivated her to make the obstacles of rare disease patients more clearly understood.

“Like everyone else, what we are hearing from the patients in our community has been tough,” Kathi said. “There was a lot of hopelessness, without their rehab, medication, treatments, clinical trials delayed or canceled … they didn’t have any hope. They are really defeated.  We have patients all over the world and it’s impacting our patient population the same everywhere. We know patients are missing critical appointments and clinical trials are either delayed or shut down completely and never coming back.”

“We all need to work hard to help patients find answers. That has always been at the center of what we do and why we do it. These people need our help.”

Why support rare now?


Nearly 30 million Americans are living with a rare disease and  COVID-19 continues to present a myriad of challenges that is not only impacting the patients but their families and caregivers as well.

At the top of the list is reduced access to vital medical care which, in turn, has exacerbated already existing challenges. Among those already existing challenges include an accurate diagnosis of a complex disease, limited treatment protocol options, financial struggles, absence of hope and mental fatigue for patients, families and caregivers. 

“I don’t think you need to have a rare disease to have had all of this impact you mentally,” said Dr. Justin Hopkin, the father of a son with a rare disease and a rare disease advocate. “Managing the mental aspect of all this has been difficult for everybody. Finances, jobs, social issues … all those things have weighed heavily on most of us, but we know it’s been especially hard on those living with a rare disease.”

The isolation some Americans are feeling as we navigate the obstacle course of this pandemic is how some rare disease patients feel everyday. 

Since March, medical research on diseases other than COVID-19 has taken a huge hit. There have been countless research studies abandoned, suspended or postponed. 

Much is still unanswered about the ultimate impact the pandemic will have on clinical trials, too. That’s because it is unclear how many of these studies will eventually restart and how long it will be before they begin again.

Clinical trials play a critical role physically and mentally for rare disease patients. They show researchers and doctors what does and doesn’t work, and are a critical vehicle for rare disease patients to receive or obtain life altering therapy.

A clinical trial being delayed, interrupted or canceled can be a tipping point for a rare disease patient . They don’t have the luxury in most cases of multiple clinical trials. And the delay, interruption or cancelation of that trial jeopardizes any hope they might have had and could even be life threatening.

All this is going to lead to a healthcare system already pushed to its extreme limits by this pandemic becoming backed up and slowed even more. And it will directly and adversely impact a Rare Disease Community that faces an uphill climb under optimal conditions.

“Like everyone else, what we are hearing from the patients in our community has been tough,” said Kathi Luis, a rare disease advocate. “There was a lot of hopelessness, without their rehab, medication, treatments, clinical trials delayed or canceled … they didn’t have any hope. They are really defeated.”

In April, the National Organization For Rare Diseases (NORD) reached out to patients to gauge the best way to guide support and help for the Rare Disease Community.

Nearly 800 people responded to the survey from NORD’s research team and the results were made public last month.

95 percent of the respondents said they have been impacted at a cost to both their immediate and long-term health and well-being. Nearly three-quarters have had a medical appointment canceled and, of those, 65 percent were offered an alternative appointment via phone or video. 69 percent of the respondents have concerns about medication and medical supply shortages.

“Treating rare and medically complex cases like mine takes multimodal approaches. Remove one piece of the puzzle and the care patients receive results in sub-optimal outcomes. COVID-19 further exposed a glaring problem in the healthcare system by asking us what defines essential medical treatments,” said Marni Cartelli, a rare disease patient. “What if a treatment on its face doesn’t keep someone alive but is supplemental to one that does? Also, we must ask ourselves, is keeping someone alive the only essential medical service? What about keeping someone’s ability to feed themselves? These are all questions I ask myself every single day but society only had to ask itself in this pandemic.”

The time for action to support the Rare Disease Community is now. As we all adjust to what is the most recent new normal, the mental fatigue associated with the unknown for rare disease patients continues.

Uplifting Athletes is uniquely positioned to inspire hope in the Rare Disease Community. The 7,000 Mile Challenge is a way for YOU to get active and rally support for the rare diseases this summer.

Inaugural 7,000 Mile Challenge to support the Rare Disease Community set for July 17-26


Uplifting Athletes is proud to announce the inaugural 7,000 Mile Challenge – a 10-day event starting July 17th that will bring focus and attention to the more than 7,000 known rare diseases.

People affected by a rare disease are fighting against a finite clock that didn’t stop because of COVID-19. We’re letting the Rare Disease Community know that we won’t stop fighting for them!

“We are rallying our extensive network behind one initiative this summer so that we can continue to support our friends and partners in the Rare Disease Community,” Uplifting Athletes Executive Director Rob Long said. “Our team has worked hard to find a way to afford everyone the opportunity to take action and help the Rare Disease Community.”

It does not matter whether you are a casual walker, an avid runner, swimmer or roll on wheels of any kind, you can help make a difference for the Rare Disease Community. To participate in the 7,000-Mile challenge join an existing team, create a new team for you and others, or participate as an individual.  

Track and add your mileage to the collective Uplifting Athletes total using any single day or combination of days throughout the 10-day challenge. You can collect pledges for every mile you contribute to the challenge to support the mission of Uplifting Athletes. 

Join Uplifting Athletes wherever you are July 17th to 26th and rally your support for the Rare Disease Community through activity, donation or both!

To pre-register and start helping Uplifting Athletes Tackle Rare Diseases, visit upliftingathletes.org. Now is a time for action so no one in the Rare Disease Community lives without hope.

Proceeds from the 7,000 Mile Challenge support the mission of Uplifting Athletes and its charitable programs: Rare Disease Awareness, Rare Disease Research, Uplifting Leaders and Uplifting Experiences.

Any questions about the 7,000 Mile Challenge, please send an email to info@uplitingathletes.org.

Uplifting Athletes cancels all annual Lift For Life events for 2020


COVID-19 has led to many adjustments of the college athletic schedule. The football student-athletes and programs Uplifting Athletes work with face a condensed time frame to prepare for the upcoming season under heightened safety precautions.

In order to avoid any additional pressure, Uplifting Athletes made the decision to cancel all our annual Lift For Life events this summer.

On behalf of the Rare Disease Community Uplifting Athletes serves, thank you to everyone who has supported Lift For Life in the past. We look forward to a full Lift For Life schedule in 2021.

Lift For Life is the signature event for universities across the country that are part of the Uplifting Athletes nationwide network of chapters.

It is more important than ever for Uplifting Athletes to be there for our friends and family affected by Rare Diseases. Please stay tuned for a big announcement on Monday June 22 on how you can help rally support for the Rare Disease Community this summer.

NC State Chapter Leader Thomas Ruocchio values opportunity to come together and support a common cause


When NC State tight end Thomas Ruocchio headed to Philadelphia for his first Uplifting Athletes Leadership Development Conference in 2017, he was anticipating a weekend of business and logistics meetings.

Four years later, the outgoing NC State Chapter President appreciates the weekend of connecting with other college football student-athletes bound together by the rare disease cause.

The 2020 conference, held in late January, was Ruocchio’s fourth as a chapter leader and gives him the unique distinction of attending the single most Leadership Development Conferences by a student-athlete.

“I remember the first time I came, I thought this was going to be all about business and logistics,” Ruocchio said. “I’ve learned over my coming four times there is a logistical aspect to this because there has to be. But even more than just the nuts and bolts of running a chapter, it’s about becoming a leader and getting some valuable life skills for everyone involved.”

The annual Uplifting Athletes Leadership Development Conference provides an opportunity for college football student-athlete leaders from different schools to develop relationships that stretch beyond the field, absorb enhanced mission and vision knowledge based on Uplifting Athletes’ four programs and plot a chapter strategy for the upcoming year.

Ruocchio is drawn to the relationships established at the conference and the ability to have 30-40 guys going through the same experiences on different campuses around the country sharing those unique aspects of their journey.

“I was telling my mom about this conference before this year, about what a unique opportunity this is,” Ruocchio said. “The only way to share what you are going through as a college football player is with a teammate. And he’s going through the exact same experience you are.

“Here in Atlanta this year, you get to hear about 30-something unique individual experiences from guys at 20 different football programs. I really enjoy being able to hear everybody’s unique story. It’s a chance to come together to support a common cause and to each share our unique individual stories. You can’t get that anywhere else.”

This year because the conference had an odd number of student-athletes, as the veteran of the group, Ruocchio was offered his own room. But part of the charm of this conference, in his opinion, is being paired up with a roommate from a different school each year.

“I could have probably come to one or two of these and been able to run our chapter at NC State. It’s run so well and we are given all the right tools to be successful at this conference,” he said. “Coming back for the whole experience and meeting people has kept me coming back. I’m sad it’s my last one as a player and chapter leader.”

A lot has changed at Uplifting Athletes during Ruocchio’s tenure as a chapter leader at NC State. His four years of experience has helped, but overall he sees the leadership conference as a strong foundation to have a successful year as a chapter. And recent additions, such as the player panel and an Uplifting Experience, provides an all-around better foundation for young chapter leaders.

“My favorite part has always been the player panel. I always find the questions are so real-life and you don’t run into too many people on campus who can provide you those real-life answers to some of those questions we have about life after football,” Ruocchio said. “I’m on the cusp of being that guy who will start a life after football with the clock ticking, it’s been so valuable to hear from others.”

From a fundraising perspective, the four programs and the Young Investigator Draft have also helped everybody from teammates, to compliance, to each individual donor understand the value of each dollar raised and how it’s being put to good use.

“It’s helped from my perspective as a chapter leader so much to see exactly how the organization is using some of the funds we raise at the chapter level. It’s also given me a much more personal connection to the cause,” Ruocchio said. “Instead of just focusing on raising cash, we are able to connect to the cause. It’s a much clearer understanding of what we are doing together. Early on as a chapter leader I couldn’t really see the entire picture and I don’t know if that was just me being a young chapter leader or what? But I know and understand the cause and our part much clearer today.”

On behalf of the Rare Disease Community we serve, Uplifting Athletes would like to thank Thomas for his dedicated commitment and service to the rare disease cause during his time as a college football student-athlete at NC State.

Rare Disease Research Uplifting Athletes helped fund translating to support COVID-19 fight


Pictured above are University of Pennsylvania researchers Dr. Alberto Japp, ’20 Young Investigator Draft Class (second from left) and Dr. David Fajgenbaum, ’18 Young Investigator Draft Class (third from left). 

We are discovering more every day about the vital role rare disease research plays, not only for those affected by rare diseases, but also for those impacted by more common illnesses as well.

Translational and collaborative research Uplifting Athletes helped fund through its Young Investigator Draft is impacting Castleman Disease patients and provides relative science for COVID-19 patients.

Researchers at the Perelman School of Medicine at the University of Pennsylvania, home of the Castleman Disease Collaborative Network (CDCN), recently announced they know what’s happening at the cellular level of the immune system when cytokine storms occur, and the answer not only informs future potential Castleman therapies, but may also provide new insight into why similar events take place in COVID-19 patients.

The researchers recently published their findings in the Journal of Clinical Investigation Insight.

“This is why we launched the Young Investigator Draft initiative. We wanted to elevate and fund these incredible researchers to allow them to do what they do best, use the power of science to change the lives of those in the rare disease community we serve,” Uplifting Athletes Executive Director Rob Long said. “We always understood the potential of what could be unlocked by supporting rare disease research. But we were thrilled to learn of the impact that this research was having during the COVID-19 pandemic.

“We are proud to support the incredible researchers at the Castleman Disease Collaborative led by Dr. David Fajgenbaum through the Young Investigator Draft.”  

Uplifting Athletes established the Young Investigator Draft to fund bright young investigative researchers performing collaborative and translational research in order to positively impact treatments and potential cures for the entire Rare Disease Community.

Dr. David Fajgenbaum is the senior author of the study and was part of the inaugural Young Investigator Draft class in 2018. Fajgenbaum is the Executive Director of the Center for Study & Treatment of Lymphadenopathies & Cytokine Storms, assistant professor of Translational Medicine and Human Genetics, Executive Director of the Castleman Disease Collaborative Network (CDCN), and a Castleman patient himself.

“With iMCD, just as with COVID-19, it is the body’s hyper-response that’s deadly rather than the disease itself, and this study gives us new clues about why the immune cells are out of control and what we can do to rein them in,” Dr. Fajgenbaum said.

He also says he hopes this work will prompt others in the field to consider different ways to approach the cytokine storms COVID-19 patients are experiencing. A provisional patent has been filed for a new treatment approach involving inhibition of JAK based on this work.

The published study was funded by the CDCN, the National Heart, Lung, and Blood Institute, the Hematologic Malignancies Translational Center of Excellence of the Abramson Cancer Center and Uplifting Athletes.

Learn what partner organization Horizon Therapeutics is doing to help combat COVID-19


Uplifting Athletes is honored to enjoy a fruitful and expanding partnership with Chicago-based Horizon Therapeutics.

Horizon has been a believer in our innovative way to fund rare disease research since the beginning, supporting all three years of the Young Investigator Draft. Their commitment to the Rare Disease Community, rare disease research and our initiative to fund up and coming young investigative researchers has helped spark growth around the event.

Horizon’s commitment to Uplifting Athletes climbed to another level earlier this year when a partnership was formed involving Uplifting Athletes’ Reps For Rare Diseases Program and Horizon’s #RAREis initiative. Horizon sponsored the program and committed up to $35,000 in a dollar-for-dollar match and in return its #RAREis program was exposed to a new audience.

In this time of a world pandemic, many in the Rare Disease Community are doing their very best to support the patients and families that make up one of the most vulnerable populations impacted by  COVID-19 or the novel coronavirus.

We are proud of our corporate partner, Horizon Therapeutics, for their commitment to others during this time of need by donating $1.5 million to COVID-19 response efforts in Illinois and other impacted U.S. and global communities.

Those dollars will support residents who need access to critical services such as emergency food and basic supplies, interim housing and shelter and primary health care services.

Horizon is focused on researching, developing and commercializing medicines that address critical needs for people impacted by rare and rheumatic diseases. 

Stony Brook Chapter seventh annual Lift For Life to help Tackle Rare Diseases set for March 8th


The Stony Brook Chapter of Uplifting Athletes will hold its annual Lift For Life to support the Rare Disease Community on Sunday, March 8th.

Lift For Life is the signature fundraising event for the Stony Brook Chapter of Uplifting Athletes. Stony Brook is a part of Uplifting Athletes’ nationwide network of chapters led by college football student-athletes.

Each chapter embraces the mission of Uplifting Athletes by using college football as a platform to inspire the Rare Disease Community with hope through the power of sport.

The 2020 Stony Brook Chapter Lift For Life will be a competition featuring a medicine ball toss competition between six football student-athlete led fundraising teams.

Fans and supporters can pledge every yard of the longest medicine ball toss for each team. So choose your favorite team comprised of Seawolves players and visit the Stony Brook Chapter Lift For Life fundraising page to pledge now! You can also make a flat donation to any team.

The proceeds from the 2020 Stony Brook Chapter Lift For Life support the mission of Uplifting Athletes and its charitable programs: Rare Disease Awareness, Rare Disease Research, Uplifting Experiences and Uplifting Leaders.

Today, the challenges faced by the Rare Disease Community are bigger than any one individual, team or organization can tackle alone. The Stony Brook Chapter, along with a nationwide network of teams, is uniquely positioned to educate and engage the local community to shine a spotlight on rare diseases.

The Stony Brook Chapter started tackling rare diseases in 2014 when it joined Uplifting Athletes. Their inspiration comes from the long-term relationship between Seawolves head football coach Chuck Priore and a rare disease patient, Joey Ferminella. That relationship between our program and Joey continues to serve as an inspiration for all of us.

Please support the Stony Brook Chapter and help the Seawolves reach their impressive $6,000 team Lift For Life goal.

Thank you to the 2020 Sponsors that power Uplifting Athletes’ Young Investigator Draft


Uplifting Athletes is excited to host the 3rd Annual Young Investigator Draft Presented by CSL Behring on Saturday, March 7th at Lincoln Financial Field, home of the NFL’s Philadelphia Eagles.

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.

Young Investigator Draft grants fund research that is collaborative and translational in order to positively impact treatments and potential cures for the entire Rare Disease Community. The Young Investigator Draft stage provides a platform to celebrate these scientists, the impact they are having and the importance of their research.

It takes a strong team to make the Young Investigator Draft a success, and we are grateful and proud of the 15 major sponsors on our team in 2020.

“The support that we have received for this event has worked to amplify and instill more purpose in what we do on a day-to-day basis,” Uplifting Athletes Executive Director Rob Long said. “We have great passion to do all we can to have a positive and lasting effect on the Rare Disease Community. Without this event and its sponsors our impact wouldn’t be the same.”

For the third year in a row, global biotherapeutics leader CSL Behring is the presenting sponsor of the Young Investigator Draft. Their commitment as the signature sponsor has been a game changer. 

CSL Behring is a global biotherapeutics leader driven by its promise to save lives. Focused on serving patients’ needs by using the latest technologies, we develop and deliver innovative therapies that are used to treat coagulation disorders, primary immune deficiencies, hereditary angioedema, respiratory disease, and neurological disorders.

This is the third year Sanofi-Genzyme has been a teammate. This year, Sanofi-Genzyme is a Hall of Fame sponsor. At Sanofi-Genzyme, they continue to focus on being transformative in rare diseases: developing therapies, supporting research and offering innovative solutions that have the potential to offer meaningful change to those impacted by rare diseases.

PRA Health Sciences has been a strong three-year supporter of Uplifting Athletes and the Young Investigator Draft. For 2020, PRA Health Sciences is on board as an All-Pro sponsor. PRA Health Sciences is dedicated to the future of clinical development and every life it saves.

Horizon Pharma was one of the first sponsors of the Young Investigator Draft and we are honored to have them back in year No. 3 as an All-Conference level sponsor. Horizon Pharma defines its success by a different set of numbers: the number of lives touched, the number of lives changed, the number of lives saved.

For the third year in a row Retrophin is part of the Young Investigator Draft team. At Retrophin, their mission is to identify, develop and deliver life-changing therapies to people living with rare diseases.

Spark Therapeutics was the very first sponsor of the Young Investigator Draft and we will always be grateful for their commitment to rare disease research through our event. At Spark Therapeutics their mission is to challenge the inevitability of genetic disease by discovering, developing and delivering treatments in ways unimaginable – until now.

We Work For Health (WWFH) is in its third year as a sponsor and has been a strong teammate. We Work For Health is supported by PhRMA and seeks to educate elected leaders, the news media and the communities they serve about the important contributions companies and their employees make to the health and economic security of individuals, local communities, states and the nation.

Amicus Therapeutics has been on the Young Investigator Draft sponsorship team since the beginning. Amicus is a global, patient-dedicated biotechnology company focused on discovering, developing and delivering high-quality medicines for people living with rare metabolic diseases.

Ultragenyx first joined our team as a rookie sponsor of the Young Investigator Draft in 2019 and is back again. Ultragenyx is a biopharmaceutical company committed to bringing to patients novel products for the treatment of rare and ultra-rare diseases, with a focus on serious, debilitating genetic diseases.

Uplifting Athletes would like to welcome six new organizations to our Young Investigator Draft sponsorship team. Takeda, PhRMA, Ovid, Synteract, Parexel and Mallinckrodt are each 2020 rookie sponsors.

Takeda is a 2020 MVP sponsor and this patient-focused, values-based, R&D-driven global biopharmaceutical company is committed to bringing Better Health and a Brighter Future to people worldwide. Their passion and pursuit of potentially life-changing treatments for patients are deeply rooted in over 230 years of distinguished history in Japan.

PhRMA joins our team also as an MVP sponsor this year. PhRMA represents the country’s leading innovative biopharmaceutical research companies, which are devoted to discovering and developing medicines that enable patients to live longer, healthier and more productive lives. PhRMA is committed to advancing public policies in the United States and around the world that support innovative medical research, yield progress for patients today and provide hope for the treatments and cures of tomorrow.

At Ovid Therapeutics, innovations come from the heart. They listen to the needs of the rare disease communities in every element of their work. With deep professional expertise in rare disease therapeutic development and commercialization, Ovid makes those innovations a reality for individuals with rare neurological diseases and their families.

Synteract is a full-service CRO that focuses on bringing clinical trials to life. Synteract is focused on supporting innovation in drug development and advancement of better therapies in healthcare to improve patients’ lives.

Parexel is in the business of improving the world’s health. Parexel does this by providing a suite of biopharmaceutical services that help clients across the globe transform scientific discoveries into new treatments. From clinical trials to regulatory, consulting, and market access, their therapeutic, technical, and functional ability is underpinned by a deep conviction in what they do.

Mallinckrodt is a multibillion dollar specialty pharmaceutical company focused on our mission: Managing Complexity. Improving Lives. Mallinckrodt provides medicines to address unmet patient needs, stemming from 150 years of using their unique strengths, experience and expertise to help improve people’s lives.

“After the great success of the first two years of the Young Investigator Draft, we are proud to once again use our platform to promote and support the brilliant minds that are conducting rare disease research.” Long said. “We are uniquely positioned to host an event where we can foster collaboration and awareness by bringing together patients, caregivers, researchers, clinicians, industry and athletes in one room.”

Uplifting Athletes has provided more than $180,000 in funding to rare disease researchers through its first two Young Investigator Drafts.

Tickets to the 2020 Young Investigator Draft are available through the registration page. The event will include stadium tours of Lincoln Financial Field, heavy hors d’oeuvres and beer and wine prior to the program for the evening.

The challenges faced by the Rare Disease Community are bigger than any one individual, team or organization can tackle alone. At Uplifting Athletes we take pride in fulfilling our mission to inspire the Rare Disease Community with hope through the power of sport with a powerful network of more than 20 college football student-athlete led chapters, Uplifting Ambassadors and Team UA participants.

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.