A group of Franklin & Marshall College students and recent alumni have transformed a public health class assignment into a 134-page handbook for the parents of children with a rare and severe genetic disease.
Working with Visiting Assistant Professor of Biology Ellie Rice in the 2013 spring semester, the class initially focused on making a pamphlet on congenital adrenal hyperplasia, a disease that leads to hormonal disorders. It can affect sexual development, such as early puberty in boys, salt and water balance, and the ability to respond appropriately to physiological stress.
The work on the handbook was funded by a Howard Hughes Medical Institute grant through F&M's Public Health Department and the Clinic for Special Children in Strasburg, Pa., which primarily serves the Amish and Mennonite communities.
Rice and the students attended "Family Day" at the clinic, a longstanding partner of the College, to interview nine families and the clinic's medical director, Dr. Kevin Strauss, who visited the campus three times to present information and contribute to the design discussions.
"The more we talked to family members and to Dr. Strauss, the more we realized there is so much that people did not know about the disease," said Mandi Tembo, a senior public health major at F&M.
The students collected data in their research. By the end of the semester, they had an unwieldy 150-page book of nine chapters, written by six students with six different voices.
That's when a public health class on education outreach evolved into a class on writing about public health, Rice said. While impressive in its scope, the book needed editing, revising and a single voice. Tembo and biology major Carey Sentman, a fellow senior, took on the task.
"Mandi and Carey rewrote the whole book," Rice said. In addition to Tembo and Sentman, four recent alumni contributed to the book -- Class of 2013 graduates Stephen Music, Katie Sneeringer, Martha Stefaniak and Dee Yusuf.
The rewriting was arduous, Sentman and Tembo said. With each draft, they went back to parents, doctors and counselors and had them review their work and provide suggestions and advice they would incorporate into the next draft. They estimate that they wrote approximately 20 drafts.
It was a workload they were not anticipating at the start of the class, but they were committed to making the handbook comprehensive and accessible to parents.
"We asked the parents a series of questions, such as, 'What kind of questions do you have about your child's condition?' and 'What kind of questions is your pediatrician unable to answer?'" Tembo said.
Rice said she enjoyed watching Sentman and Tembo hone their writing and editing skills with the assistance of the tutors at the College's Writing Center.
"For me, the most fascinating thing was watching them develop as writers," she said.
The project also required Sentman and Tembo to develop skills in communications, illustration and formatting. "It's a very diverse set of skills they're pulling together to produce one tangible product," Rice said.
Sentman, a pre-med student, did the formatting and helped set the tone in the writing. She said the project helped her understand how genetics and public health could be combined to provide optimal care to patients.
"I could never see how the two could intersect until I came to F&M, and in particular with this project," Sentman said.
Tembo, who is from Zimbabwe and plans to work with HIV-expectant mothers in South Africa after graduation, said the handbook project exemplifies F&M's commitment to learning while doing, with the added benefit of benefitting the community.
"I think that our work not only reflects the beautiful and productive relationship F&M has with the greater Lancaster community, but also the very real and tangible results that can come out of doing research at an institution like F&M," she said.
The handbook is expected to go to press mid-May. It will be self-published and available on Amazon.com.