The University of South Florida has received a $5.66 million gift for research that aims to change the way chronic diseases like childhood diabetes are treated in this country. The gift comes from the Sarasota-based Patterson Foundation and will support the creation of a program within USF Health called Bringing Science Home.
The goal of the program, said executive director Nicole Johnson, is to find ways to encompass the physical, emotional and logistical challenges that a disease like diabetes poses for patients and their families.
USF hopes to expand its work to asthma and other chronic diseases in children, but it is starting with Type I diabetes, which some researchers and doctors think is on the rise for reasons not fully understood.
In the past two decades, USF has established itself as a center for major diabetes research trials, particularly the work of Dr. Jeffrey Krischer, which has brought hundreds of millions in research dollars to the university.
Bringing Science Home adds another dimension to USF's work in the field.
"We're creating a model for better living with all chronic disease,'' said Michael Hoad, USF's vice president for communications, noting that he's particularly pleased at the emphasis on helping parents faced with a tough task.
Few know the impact of a chronic disease diagnosis better than Johnson, 36, a St. Petersburg native who learned she has Type 1 diabetes while attending USF as an undergraduate. Then 19, she was advised to drop out of college and change her career plans to something less demanding than her major, journalism. Doctors told her to give up competing in beauty pageants because of the stress involved. As for her dream of being a mother? Probably not such a good idea.
Johnson, who now has a bachelor's and two master's degrees, was crowned Miss America in 1999 and is the mother of a healthy 4 ½-year-old. But she did change her career plans. Rather than journalism, she's on a mission to change how Americans handle chronic disease.
"A complete shift has to happen that recognizes the physical, emotional and social challenges of chronic disease," she says.
"We know it may sound lofty, and we know it will take many years to accomplish.''
With the Patterson gift, she has charted a three-phase program. It starts with a year of studying young patients and families to figure out which practices are working, which aren't, and which are missing entirely. Johnson has assembled a youth advisory board of teens, young adults, parents and caregivers, some of whom will be on hand Friday when the Bringing Science Home project is formally announced at a luncheon at USF.
The next step is using the findings to create educational and treatment tools to help patients, families and others affected by the child's diagnosis.
The plan is for those tools — which might include books, DVDs, glucose meters and sensors, cell phone applications and computer programs — to be available in doctor's offices, schools, college health centers and homes.
The third phase will address how doctors, nurses and other health care professionals can be trained to manage chronic disease in a way that takes into account the needs of patients, parents and others.
Although the cause of Type 1 diabetes is not fully understood, it does tend to run in families, giving Johnson yet another personal dimension for her work.
"I want my daughter to have the resources and tools that can give her the best shot at coping with diabetes if she is ever diagnosed," says Johnson.
Contact Irene Maher at [email protected]