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CU-provided health care takes soccer by Storm

As injuries in youth soccer grow in severity and numbers, medical personnel are now essential staff for competitive leagues and sports complexes.

A recent national study shows that for every 10,000 youth soccer players in 2014, 223 of them sustained an injury requiring hospital emergency room treatment. That’s a 74 percent increase from 2004, according to the study, which uses data from the National Electronic Injury Surveillance System and the National Sporting Goods Association. Higher levels of youth competition, and corresponding intensity, are part of the reason – along with exponential growth in participation – for the rise in soccer injuries.

Julie Nickoley of Storm soccer
Julie Nickoley came aboard as the Storm’s first head athletic trainer last April.

These increases are why the Colorado Storm Soccer Association (CSSA), one of the state’s oldest and largest youth soccer clubs, is teaming up with University of Colorado Sports Medicine specialists and UCHealth to provide on-field and off-field care for its athletes. This partnership gives young athletes access to leading sports medicine physicians with the experience and expertise in treating sports-related injuries. CU Sports Medicine specialists primarily provide care for athletes at UCHealth and Children’s Hospital Colorado facilities.

On-call for athletes, parents

In addition to providing physician care, CU Sports Medicine has hired Julie Nickoley, MA, ATC, as the full-time head athletic trainer at Colorado Storm to staff all home activities and travel with teams. While the job is immense – Colorado Storm encompasses 7,000 athletes, both competitive and recreation, playing in four regions along the Front Range – Nickoley provides care during practices, games and is on-call for athletes and parents.

When staffing home games, Nickoley is responsible for all players on the field, including athletes from visiting clubs. “For large tournaments, we can have 50 games in one day and I’m tasked with care for all players,” she explains. “Sometimes, we bring in trainers to help with volume because it’s extremely uncommon for a team to travel with an athletic trainer.” That, however, is not the case for Colorado Storm. So far, Nickoley has traveled twice with the Elite Club National League (ECNL) 14- to 18-year-old girls’ team, both times to San Diego.

A traveling athletic trainer is invaluable to the athletes, according to Caitlin McPherson, Colorado Storm goalkeeper. “Having a trainer who knows you personally, who knows the injury you’ve dealt with in the past or how to tape your ankle just right, is much more comforting than having someone you’ve never met doing the tape.”

‘There’s someone there’

Nickoley has treated a variety of injuries on the field including dislocated kneecaps, labral hip tears and sprained ankles. However, treatment doesn’t stop on the field. Nickoley further develops the home rehab plan, recommending exercises and stretches, and follows up on the player’s progress. Nickoley has also established an athletic training evaluation space inside the Colorado Storm headquarters available to athletes and parents. Having a dedicated space gives her the ability to see injuries within 48 hours, as well as provide treatment or taping before practice.

Storm soccer at Dove Valley Regional Park
The soccer fields at Dove Valley Regional Park fill up with Storm matches every weekend in the fall.

For athletes, the presence of an athletic trainer takes away the worry of injury. “It’s comforting to know if anything happens, there’s someone there, who knows what to look for, checking the player out,” says Caitlin. “Best case, the player gets checked and is cleared to return to play.”

In the event of a more serious injury, Nickoley’s close working relationship with CU Sports Medicine specialists has afforded her the ability to refer athletes and their parents to the most appropriate specialist depending on location, severity, or type of injury. She is currently working on an initiative to ensure Colorado Storm athletes have priority when the injury requires an X-ray, MRI or other procedure. This is the same approach CU Sports Medicine takes with collegiate level teams and the professional teams they support.

Concussion protocol

When she sees more serious concussions, Nickoley refers players to the CU Sports Medicine specialists at Children’s Hospital Colorado, which has a comprehensive concussion program. Nickoley has seen about 25 concussions in the last six months. She takes the injury very seriously, running through a 22-symptom list of concussion-related symptoms with players.  “I take the more conservative route – if you have two of those symptoms, it’s a concussion,” she says. In the case of a mild concussion, she tells the player, “You’re done for the day, and we’re going to wait 24 hours and then re-evaluate to see where you’re at.”

Soccer organizations are also addressing the problem through greater use of athletic trainers, such as Nickoley, as well as through rule changes. U.S. Soccer, the sport’s governing body, has told youth organizations that there should be no heading of the ball for players age 10 and under, while limiting the amount of heading during practice for ages 11 to 13.

Another benefit of having a full-time athletic trainer embedded in Colorado Storm is education on injury prevention techniques. Nickoley is working with coaches on a few specialized exercises that help decrease risks of anterior cruciate ligament (ACL) injury in girls, who are anatomically more predisposed to these injuries. She also consults with the coaches on nutrition, hydration, recovery, flexibility, and proper warm-up and cool-down so that athletes are conditioned for the high level of play.

Nickoley is only six months into the five-year partnership between CU Sports Medicine and Colorado Storm but well on her way to building a comprehensive care program for the young athletes. “There’s still work to be done. Ideally, we want to have programming for all regions of Colorado Storm,” she says. Right now, she’ll continue to focus her efforts on current players and game-day activities. Exceptional care, at all times, is what CU Sports Medicine specialists offer their Colorado Storm athletes.

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Sexual Misconduct Survey launches

Respect Expected
Sexual Misconduct Campus Climate Survey, Oct. 24 – Nov. 11

Earlier this week CU Anschutz students, faculty and staff received an email from our Office of Equity about our campus’s first ever Sexual Misconduct Campus Climate Survey. This survey comes at a time when conversations about sexual misconduct on college and university campuses are at the forefront of our national media.

This survey will be delivered to all active students and employees. As an employee, you may feel that this survey isn’t intended for you. However, our campus climate is shaped by all of us, and unfortunately none of us is immune to sexual misconduct. It’s not just sexual assault we want to prevent—it’s also interpersonal abuse, stalking, sexual exploitation, sexual harassment and retaliation. We need to know of the experience(s) you have had during your time at the university so we can improve our efforts to prevent and remedy those situations.

Your survey responses will remain confidential: our research team will de-identify responses before analyzing the data, and all findings will be reported only in aggregate.  Incidents you share in the survey will never be connected to you.

This survey is incredibly important to our campus community. Your feedback will directly influence how we move forward in improving our prevention of and response to all types of sexual misconduct. Please consider taking approximately 20 minutes of your time to complete it; you can be entered to receive a $50 Amazon gift card as a thank you. Check your university email for the link and to learn more visit the Office of Equity website.

Guest contributor: Sarah J. Berg, Associate Director, Office of Equity | Deputy Title IX Coordinator of Prevention, Training & Outreach

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Student-led project benefits pre-health majors

On an October Sunday, as a crowd of people maneuvered through a maze of tables in search of their next stop, Nevan McCabe stood on the sidelines of a transformed campus gymnasium beaming. His “baby,” the first 9Health Fair ever held on the CU Denver campus, was a bustling success, attracting more than 150 people, a welcome reward for McCabe and his fellow students who worked diligently since July to make it happen.

Nevan McCabe is a CU Denver pre-health major
Nevan McCabe is a CU Denver pre-health student and vice president of CU Denver Future Doctors. He got the ball rolling for the first 9Health Fair ever held on the CU Denver campus.

McCabe first envisioned the event last spring, when he volunteered at one of the more than 130 9Health Fairs across the state to gain experience drawing blood. “I was hearing a lot of testimonials from patients who had had huge life changes and life-saving experiences,” said McCabe, a CU Denver pre-health student. “So I thought, ‘Why don’t we have one of these?’ It just seemed obvious.”

Selling his idea was the easy part. McCabe, vice president of the student group CU Denver Future Doctors, had his fellow officers and adviser, Charles Ferguson, PhD, convinced almost before he finished his pitch. One reason for the easy bite, said Ferguson: The idea captures his chief message to his students.

Screenings at 9Health Fair at CU Denver
Screenings for a variety of health conditions were offered at the 9Health Fair at Auraria on Oct. 16.

“One of the big pushes in health care today is helping students learn how to work collaboratively and understand that medicine has to be about serving the community. It’s not just about the technical aspects of healing. It’s about understanding culture. It’s about understanding the barriers that people have to getting adequate healthcare. They need to do things for people because it’s the right thing to do, not just because it strengthens their application.”

A student and neighborhood boon

Since its launch, the project has been student-led, and most of Sunday’s 80 volunteers filling the PE Event Center gymnasium were also pre-health students given “first dibs” on positions. “The medical field is starting to rotate toward a more public health-centric mindset of preventing disease instead of just treating it, and the 9Health Fair is all about public health,” McCabe said, explaining the student benefit. An Aurora native who somehow finds time for regular workouts, climbing 14ers, playing the guitar and, most recently, learning the tricks of latte art, McCabe hopes to attend the CU School of Medicine on the CU Anschutz Medical Campus and become an orthopedic surgeon.

Health care professionals from CU Anschutz were represented among the volunteers, as Kevin Deane, MD, PhD, associate professor of medicine, and his team offered a rheumatoid arthritis screening.

As youngsters bared their arms for flu shots and opened their mouths for dental exams, McCabe explained the decision to include children in the fair. The campus has a relatively large nontraditional-student population with families, he said, and a significant number of area neighborhood families struggle financially. “We found that from Colfax and Speer to Colfax and Federal, the average income for a family of four was $20,000,” McCabe said.

Dental screening at 9Health Fair at Auraria
Dental screenings were among the services offered at the 9Health Fair at the Auraria Campus.

While most of the fair services are free, a few, such as the comprehensive blood test, which looks for indictors of everything from thyroid issues to heart disease, have fees. So the students added fund-raising to their long list of preparation, so that they could offer testing to some families at no charge. Marketing was also a big focus, with the group canvassing the campus and neighborhoods, dropping off flyers in English and Spanish.

Only the beginning

After all of the tables were put away and the fair-goers long gone, the students’ work wasn’t done. “It’s just beginning,” McCabe said. Quest Diagnostics, which volunteers its services for all of the 9Health Fair blood-testing, will send the students itemized data, which the students will forward to public-health researchers.  Among other things, screenings included diabetes, oral health, body mass index, vitamin-D levels, and colon, skin and prostate cancers, which will help researchers study health disparities in the region.

Also, so that the project doesn’t die when he graduates, McCabe and the student group will continue their documentation for future students, so that the fair becomes an annual event. “We’ve created a huge master list online detailing everything we’ve done,” he said. “This way, they don’t have to re-create the wheel every time.”

Ferguson definitely envisions McCabe’s brainchild enduring.  “Nevan gets the gold medal for the idea; he and his team have worked really hard. But the whole campus community just stepped right up,” he said, noting that student and staff volunteers from across campus, not just CU, have made big contributions, including from Facilities Services and the Health Center at Auraria. “9Health Fair was really excited about it, too, because they have always wanted to have something in this area. It’s been an amazing experience.”

Gazing at the big turnout Sunday, McCabe couldn’t help smiling. “It’s not just me. It takes a whole team of people. But the idea that I could even get the ball rolling on something like this that impacts a whole community in such a great way is amazing,” McCabe said. “There’s no better way to serve people than by educating them about their health. It’s kind of my baby. I’m really proud of this.”

Guest contributor: Deb Melani

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Student says CU at top of dental schools

By age 26, Brandon Powell was living the life he’d always envisioned for himself.

For four years, the 6-foot-3 point guard had been jetting around Europe, climbing the ranks of professional basketball teams in Germany and Austria. He got to travel to exciting places, play in front of adoring fans, and earn a decent living via a sport he’d loved since age 5. But one day on the court he began to feel a twinge of dissatisfaction. “I realized there is something more to me than just putting a ball in the hoop,” recalls Powell. “I wanted to give something back to my community.”

Brandon Powell
Brandon Powell

Five years later, at age 31, Powell is immersed in his second year at the University of Colorado School of Dental Medicine, an institution he chose from an illustrious pool of offers for two main reasons: Its location, at a state-of-the art new medical campus rich with opportunities for interdisciplinary collaboration; and its array of new initiatives aimed at boosting student diversity.

“I interviewed at some of the top dental schools in the country and would say the resources we have here are bar-none the best. No one can compete with this.”

Long path to dental school

Powell’s long path to dental school was neither easy nor conventional. With a father in the Air Force, he moved from Ohio to Alabama to Japan to Colorado as a kid, shooting hoops everywhere he went in hopes of someday getting a basketball scholarship. He did, at Loyola University in New Orleans. But he didn’t stop there. “I’m one of the few who can say he went to five colleges in five years,” jokes Powell. His college basketball career led him to schools in Louisiana, Kentucky, Colorado, and finally Missouri Baptist University, where he earned a bachelor’s degree in business administration.

After a stint playing exhibition ball in Las Vegas, he was off to Europe. Just hours after he stepped off the train in Graz, Austria, his prospective coach pitted him against another American player for a game of one-on-one. The winner got the job. He won. “People always glamorize professional sports but in reality they can be extremely cutthroat,” he recalls.

After four years, Powell had had enough. He returned to the states and – at the urging of a childhood friend who was a dentist – set his sights on dental school. But he had serious doubts. “I started to wonder ‘Am I too old? Have I wasted all this time playing basketball? Can I actually succeed in this?’” he recalls. “But I soon realized that my obsession with being the hardest-working, most-dedicated athlete could transfer straight into being a competitive student.”

A unique opportunity at CU

Powell spent two years completing science prerequisites at the University of Colorado Colorado Springs, and commuted to the CU Anschutz Medical Campus on Saturdays and every day during summer to participate in the Undergraduate Pre-Health Program. (The 13-month program aims to increase the number of underrepresented individuals in healthcare, by exposing undergraduate college students to courses, mentors, and internships on the campus.) When it was time to apply to dental school, Powell applied to Columbia University, University of Pennsylvania, University of Connecticut, and CU. With stellar grades and an impressive extracurricular portfolio he got into all four. But at CU he saw a unique opportunity.

“I felt like CU was moving in an exciting new direction in terms of diversity, and I really wanted to be a part of that movement.”

‘A role model for others’

In 2015, the School of Dental Medicine hired Kenneth Durgans, Ed.D., as its first-ever dedicated Associate Dean for Diversity and Inclusion. The school has also increased financial aid offerings for people with diverse backgrounds, ramped up outreach and recruitment from historically underrepresented regions, and boosted multicultural education of faculty members. In fall of 2016, 31 percent of incoming students were from diverse backgrounds and the school has doubled the number of diverse students coming in for interviews.

“The research is clear: It is imperative to the healthcare of the entire community that we have providers from diverse backgrounds,” says Durgans, noting that patients often feel more comfortable going to dentists who look like them, and young people interested in dentistry as a career can benefit from having mentors who share a cultural background. “Brandon is the kind of student we like to brag about. Once he gets out there and starts serving the community, he will be an important role model for others.”

Powell says he’s not sure quite when that day will come. He could be a practicing dentist after four years of school. But he’s strongly considering staying on to specialize in maxillofacial surgery, which would enable him to help patients who have been disfigured by trauma or cancer. His advice to others considering a career in dentistry? Use the strength you’ve gained from whatever you’ve been doing and use it to hunker down and work hard.

“It’s a serious commitment, but if you go after it relentlessly and stick with it, you have a great shot at success.”

Guest contributor: Lisa Marshall

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Closing the gender gap in medical research

Women and men are not equals when it comes to inclusion in medical research, from basic cell models to human clinical trials. Women have often not been included in numbers necessary to show how they differ from men in order to optimize the prevention, diagnosis and treatment of cardiovascular disease and diabetes, as well as other diseases.

The Center for Women’s Health Research (CWHR) at the University of Colorado Anschutz Medical Campus has worked to change that paradigm through its support of research and community education since 2004, and recently hosted its inaugural National Conference on Women’s Health and Sex Differences Research.

CWHR Conference research poster
CWHR researcher Melanie Cree Green, MD, PhD, discusses her poster on insulin resistance in girls with PCOS with Elizabeth Barrett-Connor, MD, a renowned women’s health scientist from the University of California, San Diego School of Medicine.

“Sex Differences Across the Lifespan: A Focus on Metabolism” brought together leading researchers from across the country in the areas of women’s health and sex differences to share and discuss their latest findings. “The conference’s lifespan approach to disease research allowed for an exciting agenda, where sessions included Pregnancy-Related Determinants of Chronic Disease Later in Life, Implications of Sex Differences in Type 2 Diabetes Across the Lifespan, and The Effect of Life Transitions on the Risk for Obesity,” said CWHR Director Judy Regensteiner, PhD. “We were honored to collaborate with the University of Colorado Colorado Springs as well as the Society for Women’s Health Research to increase our impact locally and nationally.”

Lorna Moore talks with conference attendees
CWHR Senior Faculty member Lorna Moore, PhD, talks with conference attendees.

The conference highlighted several next steps in the march forward of women’s health and sex-difference research. Marjorie Jenkins, MD, of the FDA Office of Women’s Health spoke about the FDA’s advances in drug testing in women. Jed Friedman, PhD, of CU Anschutz shared findings on how and why obesity might worsen the health and development of a pregnant mom’s baby. And Sherita Hill-Golden, MD, of Johns Hopkins University talked about why women with diabetes are more likely to have cardiovascular complications than their male counterparts.

Attendees at inaugural CWHR national conference
CWHR Director Judy Regensteiner, PhD, and Marjorie Jenkins, MD, Director of Medical Initiatives and Policy Advancement at the FDA Office of Women’s Health.

In addition to the scientific sessions, the conference included a breakfast and presentation by leading women’s health researcher, Wendy Kohrt, PhD, and business leader Ginger Graham, MBA, for community members who came to the conference including a group of members of the CWHR’s Advisory Board. “This conference goes beyond the research being shared between scientists – we wanted the community to benefit from and be a part of the interaction and next steps in sex-difference research. It is a way for us to honor those who helped make this conference possible, and to carry on our mission of community inclusion and education,” said Regensteiner.

“The community breakfast was spectacular; both speakers had everyone hanging on every word,” said Mary Sissel, longtime supporter and Board Chair emerita of the CWHR. Mary and her husband George, along with Judi and Joe Wagner, were instrumental in supporting the conference, and were proud to attend the event.

Wendy Kohrt speaks at CWHR conference
Wendy Kohrt, PhD, CWHR Co-Associate Director and Nancy Anschutz Chair in Women’s Health Research, speaks at the community breakfast.

Junior faculty scientists who are supported by the CWHR were invited to the conference to present their work in short “data blitz” sessions, which were very well received. In addition, the poster session interactions allowed them to build potential connections with established faculty.

This conference played an important role in contributing to the growing body of knowledge in women’s health and sex differences. Regensteiner is proud of the success, noting, “The new collaborations formed at this conference will shine a light on our priorities in this arena as we work toward a future in which every patient is treated according to evidence-based research that takes sex differences into account.”

The CWHR plans to hold its next national conference in 2018.

Guest contributor: Sarah Westmoreland, MPH, Public and Community Education Liaison, Center for Women’s Health Research

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Scientists map genome of African diaspora in the Americas

Researchers at the University of Colorado Anschutz Medical Campus  along with colleagues at Johns Hopkins University and other institutions have conducted the largest ever genome sequencing of populations with African ancestry in the Americas.

The scientists, for the first time, have created a massive genetic catalog of the African diaspora in this hemisphere. It offers a unique window into the striking genetic variety of the population while opening the door to new ways of understanding and treating diseases specific to this group.

The study was published today in the journal Nature Communications.

Kathleen Barnes, PhD, director of the Colorado Center for Personalized Medicine at CU Anschutz.

“The African Diaspora in the Western Hemisphere represents one of the largest forced migrations in history and had a profound impact on genetic diversity in modern populations,” said the study’s principal investigator Kathleen Barnes, PhD, director of the Colorado Center for Personalized Medicine at CU Anschutz. “Yet this group has been largely understudied.”

Barnes said those of African ancestry in the Americas suffer a disproportionate burden of disability, disease and death from common chronic illnesses like asthma, diabetes and other ailments. The reasons why, remain largely unknown.

With that question in mind Barnes and her colleagues, with support from the NIH’s National Heart, Lung and Blood Institute, created the `Consortium on Asthma among African-ancestry Populations in the Americas’ or CAAPA. They sequenced the genome of 642 people of African ancestry from 15 North, Central and South American and Caribbean populations plus Yoruba-speaking individuals from Ibadan, Nigeria. The ultimate goal of the study is to better understand why they are more susceptible to asthma in the Americas. But the result was a wide-ranging genetic catalogue unlike any other.

The African genome is the oldest and most varied on earth. Africa is where modern humans evolved before migrating to Europe, Asia and beyond.

Barnes and her team are finding changes in the DNA of Africans in the Americas that put them at higher risk for certain diseases. Perhaps one reason for this is the amount of genetic material they carry from other populations including those of European ancestry and American Indians.

“Patterns of genetic distance and sharing of single nucleotide variations among these populations reflect the unique population histories in each of the North, Central and South American and Caribbean island destinations of West African slaves, with their particular Western European colonial and Native American populations,” the study said.

For example, the researchers showed that the mean African ancestry varied widely among populations depending on where they were settled, from 27% of Puerto Ricans to 89% of Jamaicans. In places like the Dominican Republic, Brazil, Honduras and Colombia there was also significant Native American ancestry as well.

Untangling this genetic history will take years, but Barnes said the catalogue is a good start. The data will serve as an important resource for disease mapping studies in those with African ancestry.

“This will contribute to the public database and give clinicians more information to better predict and track human disease,” Barnes said. “It will allow us to tailor clinical to specific individuals based on their ethnic and racial backgrounds.”

A companion paper demonstrating the clinical utility of the African diaspora genome catalog appears in the same issue of Nature Communications.

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Dental researcher has Treacher Collins syndrome and studies craniofacial disorders

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Francis Smith in his office

Guest contributor: Debra Melani

Crouched at his desk in a quiet corner of a university lab, Francis Smith, PhD, peers at rows of jagged lines spanning his computer screen. The hum of rotators gently mixing vials is all that breaks the silence, as the postdoctoral research fellow studies genome sequencing reads, looking for mutations. As with most researchers, Smith hopes for a breakthrough discovery someday. But unlike most scientists, he has the mutations he seeks.

Francis Smith as a child
Francis Smith as a child

Because of a rare craniofacial disorder, Smith entered the world with no ears, eye sockets or cheek bones, a severe cleft palate (when the roof of the mouth doesn’t close), and a malformed jaw. His case was so severe that he couldn’t hear and couldn’t even breathe. His parents abandoned him at birth. Doctors doubted the orphaned infant would survive, even after an emergency tracheotomy allowed his first breath.

But today, after his rough beginning followed by years of reconstructive surgeries and unimaginable bullying from people who labeled him intellectually inept, Smith boasts an impressive vita and is working on his second postdoctoral fellowship at the University of Colorado School of Dental Medicine. At 41, he’s done research on craniofacial disorders from London to San Francisco, given speeches from New Zealand to the United Kingdom, and boasts Cher as a friend and comrade in arms.

Cher with Francis Smith
Cher with Francis Smith

“Ever since she starred in the movie ‘Mask’ about a boy with a craniofacial condition, she has led an annual retreat for children and families with the disorders,” Smith said of Cher, whom he has met several times since attending his first retreat in 1994. “She has always kept up on how I’m doing.” Now Smith serves as mentor and role model at Cher’s and other events around the world, hoping to inspire children who confront his challenges and prevent them from enduring his pain.

Living and studying Treacher Collins syndrome

Smith has Treacher Collins syndrome, a genetic disorder that strikes one in 50,000 births and is just one of upward of 20 birth defects that impede normal development of the bones and tissues of the head and face. After months in a NICU and three years in a state foster-care system, Smith was adopted by a family in Indiana that changed his path. His parents fought for him (and his 11 siblings, 10 of whom were also adopted with special needs), as even school teachers and administrators didn’t understand the little boy with severe speech and hearing impediments could be of normal (and actually high) intelligence.

“I just buried everything inside to protect myself,” said Smith, who had a hole in his throat for a trach tube to breathe and a bulky, bone-conducting hearing aid with headband to hear during his childhood. “I got to the point where I could not express emotion.”

Francis Smith at the piano
Francis Smith at the piano

During those years, Smith immersed himself in the library of medical books in his home, due to his and his siblings’ slew of health disorders. He became enthralled with anatomy and his own condition, asking for anatomy coloring books and drafting intricate pictures of his malformed skull. He also began toying with the family piano, and a hidden talent in the boy born deaf, now an accomplished classical pianist and violinist, was discovered at an early age.

‘A unique combination of skillsets’

After breaking out of his shell at “an accepting” high school, Smith focused his career on craniofacial disorders, today doing bioinformatics and genome analysis of embryonic tissue under the supervision of CU School of Dental Medicine Associate Professor Trevor Williams, PhD. “Francis does very detailed, rigorous analysis of facial shape using specialized techniques,” said Williams, adding that Smith brings a unique combination of skillsets to CU’s program, as he’s able to translate what he knows of biology into the public arena.

“He’s testified before Congress. He’s done blogs. He wrote a foreword for ‘Wonder’ (a book about a boy with a craniofacial disorder set to release as a movie next year starring Julia Roberts and Owen Wilson). Francis is very personable,” Williams said. “He’s not someone who’s embarrassed by his condition, so he’s a real spokesperson. There are some people who can do the science, and there are some people who can talk to Congress. Francis can really fit in on both of those levels.”

Francis Smith with his mother
Francis Smith with his mother, Betty

Smith, who now uses a CPAP machine at night rather than a trach tube to help breathe and sports a hearing aid the size of a quarter, beams as he talks about giving his first mini-lecture to CU dental students on the surgeries involved with his syndrome. He talks excitedly about wanting to help bring the scientific and medical communities together in advancing treatment and prevention of craniofacial disorders.

And his admiration of his adoptive mother, still his chief advocate at age 92, shines through when he describes a recent project called Fabulous Faces at Sea, which involved the two sharing their experiences with like families on a Caribbean cruise. Smith hopes to make the trip a regular event, as he continues his goal of helping the children whom he calls the “real-life” superheroes. “I want to use my life as an example of what they can do despite their challenges and advise them to persevere.”

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