ALS Alert Newsletter | June

The Power of Research, the Promise of Hope

Whether the focus is butterfly fish or a deadly disease, John Driscoll believes that science holds the key to understanding — and hope.

Avid scuba divers and snorkelers, John and Janis Driscoll use Janis' sabbatical to investigate the habits of the butterfly fish.

In the 1980s, Janis Wiley Driscoll, a professor of psychology at the University of Colorado, wanted to spend her sabbatical conducting research in her specialty, animal behavior, but she also wanted to share that time with her husband John. Together, they hit upon a solution. “We both were avid scuba divers and snorkelers,” John recalls, “so we thought it would be fun to use her sabbatical to investigate the habits of the butterfly fish, a tropical reef fish.”

John was also a scientist, having worked for several years at Boeing Aerospace as a metrologist, a job that involves precision measurement and comparison of mechanical mass, pressure and volume. Since Jan’s investigation involved the spatial relationship between butterfly fish mates in three different species, John’s measurement skills, while far afield from marine biology, proved a perfect fit.

“The fun part of it was that we were able to combine her specialty with my measurement techniques,” he recalls. “Together, we came up with some surprisingly different information that changed how marine biologists think about fish pair bonding while assessing a method of evaluating the health of ocean reefs.” The couple published their findings in the scientific journal Environmental Biology of Fishes, in 1988.

Adding Value

John’s story has a point — one that has given his life a special focus today. “What Jan and I did epitomizes how we felt about research — that there’s an added value when diverse minds come together to tackle the same problem from different viewpoints,” says John, who lives in Dewey, Arizona. “That’s why I’m so thrilled to put money into the research itself.”

The research he references involves a range of scientific studies funded through the Robert Packard Center for ALS Research at Johns Hopkins. Founded in 2000, the Packard Center now is the world’s leading scientific operation dedicated solely to understanding and combating Amyotrophic Lateral Sclerosis (ALS). Commonly known as Lou Gehrig's disease, ALS is a progressive neuromuscular illness that causes degeneration of motor nerve cells in the brain and spinal cord. While rare, this mysterious disease has no known cure, with a majority of patients succumbing within two to five years of diagnosis.

When the Driscolls received news in 2006 that Jan was afflicted with ALS, it didn’t stop them. Instead, they immediately set to work on a new project — to start a fund that would support ALS research.

Discovering Packard

“For us, it was another research investigation,” says John. “We searched online and read articles, trying to find an organization to support that made the most sense to us.” After a thorough review, the couple chose the Packard Center. “We wanted our gift to go to basic research that was seeking to address the causes of ALS itself,” he notes. “Packard clearly stood out in this regard.”

After Jan passed away in 2008, the Janis Fund was created, with the Packard Center named as the recipient of all generated dollars. While John was pleased with the new trust fund, he still felt that there was more he wanted to do. “Since we had no children, Jan had been in favor of making a gift to the Packard Center, so I decided to make that gift from both of us.”

He worked with his attorney and the Johns Hopkins Office of Gift Planning to design a bequest — one that, over time, will provide a significant gift for unrestricted financial support to the Packard Center. Such unrestricted gifts are particularly useful to research centers like Packard, because they provide seed money for new research projects that show the greatest promise.

Understanding that the Packard Center depends on philanthropic funding to operate, John hopes that his future bequest will inspire others to do something similar and define their own legacy. Being a supporter, he says, makes him feel even closer to Packard and its unique research model, which brings together ALS scientists from all over the world to study the disease in open collaboration. “They make me feel like I am a part of what’s going on now,” he says.

Finding Hope

“As someone who’s been involved with science all of my life,” John notes, “I know that my gift will make a difference, because of the quality of fundamental research that Packard does. They’ve got their heads down and they’re working hard towards a very realistic goal of finding a cure for ALS.”

Whether the focus is butterfly fish or a deadly disease, John Driscoll believes that science holds the key to understanding — and hope. “Research is a series of small steps, with one answer leading to the next question. It’s hard, gut-wrenching work. But Packard’s research has a real value.”

by: David Beaudouin, editor rising.jhu.edu 

Read David Beaudouin's blog on his experience speaking with John Driscoll here