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Interview With Executive Director of Long Island Chapter of Juvenile Diabetes Foundation

Posted on: Friday, 31 March 2006, 21:00 CST

By Ken Cerini

Learning about various diseases enables us to have the tools and information to figure out how to cope with them. Education helps to make us aware of new findings and ways to live and deal with challenges. Research is an integral part of finding a cure to any disease or sickness. The Juvenile Diabetes Research Foundation is constantly working toward a solution to help the thousands of children afflicted with Type 1 diabetes. On Long Island, JDRF's chapter raises more than $2 million a year.

Our main goal is to find a cure for juvenile diabetes and put ourselves out of business, said Barbara Rogus, executive director of the Long Island chapter of the Juvenile Diabetes Foundation. We would love to pack up our stuff and go home because we found a cure and discontinued all of the suffering involved with juvenile diabetes. Eighty-five percent of our money goes to research. We want to accelerate the progress and make juvenile diabetes a thing of the past.

What is the background of JDRF? JDRF was founded in 1970 by a group of parents who had children with diabetes. They witnessed the battle their children fought and were determined to reverse the downward trend of suffering. We have realized that insulin is not a cure; it is only a support system until we find a cure. Children must deal with a fine balance between intake of food, output of energy and the application of insulin. Without this balance, we find serious problems. Oftentimes we forget that many children look healthy and seem healthy, but there is a struggle going on within their bodies. This is where problems exist. Children can appear completely healthy but actually be on the verge of passing out due to low or high levels of blood sugar.

What breakthroughs have you made and what direction is JDRF moving in? In the 1990s we started something called the Edmonton protocol. It involved transplanting healthy islet cells into a diabetic. We have performed this procedure with approximately 500 people. It is not suitable for children and the people who conduct this procedure must take immune suppression drugs for the rest of their lives. It allows an individual to take one pill a day as an alternative to taking insulin shots. We are currently working on a procedure to regenerate our own cells. We know cells regenerate themselves in our bodies, but with people with diabetes the body sort of zaps the insulin producing cells. We have to suppress the zapping system and get deeper into the process. Small pieces of the treatment puzzle are found each day. We are also developing a closed loop artificial pancreas. Most people take insulin by needle. Approximately 10 years ago we started with an insulin pump; but the pumps break and the site must be changed frequently. Then we created a continuous glucose monitor which tests the glucose levels every three minutes. If we are able to integrate the two, we can create an artificial pancreas which would communicate between the two for a temporary solution (until there is a cure). We are always looking for better methods and trying to simplify the treatment process for diabetics.

What is your plan of attack and how long do you anticipate the process to last? We cannot set a specific timeframe. Last year we enacted a five year plan toward the elimination of diabetes. We fundraised and we are continuing in our mission to find a cure. As we get closer to a cure, the treatments are remarkably better. In the meantime, we are helping people deal with the disease. We need to help the control of blood sugar to avoid strokes, amputations, blindness and heart disease.

What are some warning signs of diabetes and what advice can you lend someone who is experiencing a struggle with the disease? Diabetes manifests itself in adults and children alike. The warning signs are the same: extreme thirst; frequent urination; sudden vision changes; sugar in urine; fruity, sweet, wine-like odor on breath; increased appetite; sudden weight loss; drowsiness and lethargy; heavy and/or labored breathing; and finding yourself in a stupor or unconscious state. Knowing this is critical because the earlier you detect the disease, the longer we can try to delay full onset. Each year, approximately 30,000 Americans are diagnosed with Type 1 diabetes; more than 13,000 are children. That's 35 children each and every day, more than one child per hour. Knowing these warning signs can save a life. We all need to continue with our efforts to encourage research and find a cure.

The Juvenile Diabetes Research FoundationAddress: 532 Broadhollow Road, Suite 118, Melville, NY 11747Executive Director: Barbara Rogus Phone: (631) 414-1126Web site: www.jdrf.org/chapters/NY/Long-Island Founded: 1970Staff: 4Annual Budget: $2,300,000Fundraised Budget: $2,300,000Program Services: 85 percent

Source: Long Island Business News

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