Bridging the Gap
A student-run project is helping patients better understand Sickle Cell Disease with guidance from UofL's Suzanne Ildstad, M.D.
Suzanne Ildstad, M.D., and medical students Crystal Clark, Pamela Barnes, Quincy Greene and Tanya Franklin
Suzanne Ildstad, M.D., is internationally known for her many accomplishments.
She directs the Institute for Cellular Therapeutics at UofL, a group of more than 30 scientists conducting research on facilitating cells (which she discovered) and the principles of mixed chimerism to develop treatments for a host of diseases. She is the only member of the Institute of Medicine from Louisville. She was the first woman to receive the Mayo Foundation Distinguished Alumnus Award. She is the founding scientist of Regenerex LLC and recipient of a host of grants from the National Institutes of Health.
However, the title that Ildstad treasures most is that of mentor, and a group of University of Louisville medical students will be forever changed by her dedication to that role.
"I've had wonderful mentors throughout my career," Ildstad explains. "Dr. Mary Templeton, a professor at Mayo, adopted several women students since our numbers were so few. Since then, I've always enjoyed mentoring others and getting students interested in science."
Ildstad and her team came to Louisville in 1998 with the support of Louisville's Jewish Hospital and Kentucky's Research Challenge Trust Fund, or "Bucks for Brains." According to Ildstad, the clinical focus of the Institute for Cellular Therapeutics, or ICT, is to develop therapeutic approaches that will allow the successful and safe use of bone marrow transplants to treat a number of diseases, including leukemia, autoimmune disorders, red blood cell disorders and acquired immune deficiency disorders.
In late 1999, with her new lab up and running smoothly, Ildstad was still looking for a student mentoring opportunity in her new academic home. After delivering a keynote address about her research on sickle cell anemia to the Falls City Medical Society in late 1999, opportunity knocked.
Sitting in the audience that day was UofL third-year medical student Nana-Hawa Yayah, who approached Ildstad after her presentation.
"She just wanted to be a part of what Dr. Ildstad was doing," remembers Tanya Franklin, a fourth-year medical student and Bellarmine University graduate. "We wanted to help, and Dr. Ildstad certainly had the experience to lead us and the opportunities for us to get involved. It was beneficial for all of us to work together."
So began the Medical Student Sickle Cell Project.
Formed in conjunction with the Student National Medical Association and Ildstad's institute, the MSSCP is "composed of African American students who are dedicated to understanding and educating others on specifics of sickle cell anemia," explains Quincy Greene, a third-year medical student and a graduate of West Point Academy.
Sickle Cell Disease is an inherited disorder of the red blood cells effecting one in about every 375 African American children in the United States. Red blood cells containing sickle hemoglobin assume a curved shape and become lodged in small blood vessels, blocking blood flow and damaging tissue. Such blockage leads to episodes of severe pain known as a "pain crisis."
Some children have been cured of sickle cell disease through high-risk bone marrow transplants. The Institute for Cellular Therapeutics is researching ways to improve the effectiveness and safety of bone marrow transplant for sickle cell patients.
Using a process that isolates the bone marrow's "facilitating cells," ICT researchers greatly reduce the risk of sometimes-fatal Graft vs. Host Disease. They hope that further refinements in protocol will lead to a state of "mixed chimerism" in the marrow recipient, allowing the patient's own marrow and the donated marrow to safely co-exist.
Taking it to the street
Right away, the Medical Student Sickle Cell Project adopted three main goals: broaden community awareness and education concerning sickle cell disease, educate medical students in a specific area of research concerning the African American community and establish an atmosphere in which the continuum of research can lead to a potential cure for sickle cell anemia.
To tackle their first goal, the group quickly decided that establishing Kentucky's first Sickle Cell Association was a priority.
"We had events at churches in the evenings to make plans and we met with lots of community groups," says fourth-year medical student and Vanderbilt University graduate Chrishana Ogilvie. "Congresswoman Anne Northup was a big help in facilitating our meeting and getting us started."
Once the goals and objectives were set, other community leaders guided the students through the process of officially organizing a new association, from selecting board members to writing mission and goal statements.
"The students' involvement has been fantastic," says Kenny Morton, president of the Sickle Cell Association of Kentucky. "They organized several events for SCAK, including health fairs and holiday benefits. Their energy is unbelievable."
Working with patients and families through the association keeps the project's student members motivated.
"The patients are the reason we're here," Ogilvie explains. "It is so important that they are well-educated about their own disease."
Franklin agrees: "The family-support groups are a great opportunity for everyone involved. We discuss nutrition, vitamins, pain management -- anything that may help families with sickle cell cope. In many cases we help patients understand what their doctors are telling them but they may not feel comfortable asking about. We help bridge that gap."
According to Bob Willis, a Louisville businessman and treasurer of the sickle cell association, the students have themselves become mentors to both children and adults affected by sickle cell disease.
"The medical students working with us make me proud, and I wish that my children could have bonded with such a group when they were younger," said Willis, the father of two children diagnosed with sickle cell disease. "For African American youth to see these young, black soon-to-be doctors in their own parks and rec centers, not just on TV -- it makes a lasting impression.
"As an adult, I see someone excelling -- like these students are -- and I want to find out how they did it. How did they get here? Then you get to hear about their dedication and hard work, hours of study plus all of this volunteer work. They are inspiring."
Lessons learned and applied
The students' efforts in community outreach are paying off as they continue through medical school and encounter patients in clinics. Having had extensive time with young patients, worried parents and extended families through their outreach activities, they enter the hospital with a certain comfort level in their ability to educate and communicate with new patients.
Working with the project also gives them opportunities to conduct their own research in one of the most respected labs in the country. In fact, it was the research component that led Greene to join the group.
"The best part about working with the project and the ICT faculty is that you are encouraged to take on as much as you like," Greene explains.
Joining the ICT lab through UofL's summer research program, Greene worked with seasoned research faculty on two projects of his own design.
One experiment focused on quantifying facilitating cells, the other tracked cell activity and movement. The experience was a valuable one.
"Before working in the lab, I had no research experience at all," Greene remembers. "Before even starting I had to learn sterile techniques and how to properly work with mice. I had to learn more about immunology. The faculty and the technical staff spent a lot of time with me and guided me."
Adding to the research experience, Greene prepared abstracts and scientific posters based on his findings, presenting them first to the ICT faculty and then to fellow students and judges as a part of Research!Louisville.
Greene's experience is not isolated. According to Ogilvie, Ildstad and the ICT faculty regularly present the students with opportunities to participate in all aspects of research -- from working in the laboratory and interpreting results to presenting abstracts at scientific meetings.
Beyond class and clinic
The project's monthly meetings began as opportunities to discuss issues and make plans concerning the group's work with sickle cell disease -- research projects, community outreach events, clinical protocols, and so forth.
Soon, however, Ildstad's leadership and concern for students broadened their time together to address a host of issues. Responding to questions and requests from the students, Ildstad has led them in group and individual sessions on how to prepare curriculum vitae, how to be good students, how to choose a residency and how to conduct career planning.
"The students set the agenda for each meeting," Ildstad explains. "It has been particularly rewarding serving as a mentor to this group, and I think it has been fun for them. Together we're charting a course for their careers."
The experience with the project also offers each student a chance to plan for community involvement outside his or her career.
"When we set up the Sickle Cell Association of Kentucky, we structured the board so that two seats would be held by students from the Medical Student Sickle Cell Project," Ildstad continues.
"At a very early age they will get to experience all the pros, cons and responsibilities of sitting on a professional board and determining long-term strategies for an organization."
Membership on the association board means committing to attend one board meeting per month, participating in fund-raising activities and championing the group's cause to elected officials and community leaders.
"Later in life, as physician-leaders of their communities, they will be asked to sit on other boards. They'll be able to make informed decisions and choices about how they can best serve their communities," Ildstad says.
At this point, the project's students are balancing their commitment to the group with their educations. The two fourth-year members will be leaving the group next spring with the largest membership of its three-year history. Franklin, of Lexington, Ky., will graduate in 2004 with a joint M.D.-M.S.P.H. degree and is planning to pursue an OB/GYN residency. Memphis, Tenn., native Ogilvie is considering a pediatric subspecialty. With a year of medical school to go, Greene, of White Plains, New York, is interested in surgery.
One thing they each have in common, however, is an appreciation for their experiences under Ildstad's mentorship and an equal appreciation for their role as mentors for their young patients.
"I'm sure we affect them in ways we don't realize," Franklin says. "These kids have a chronic, painful illness. They have to miss a lot of school; their parents have to miss work. Maybe with our help we can offer a bit of hope."
The parents and patients that they work with are quick to agree.
Perhaps Willis said it best: "As a parent, as an African American, as a person -- these students offer me comfort and encouragement that the future is indeed bright."


