Many Voices, One Goal

Many Voices, One Goal

As surprising as it seems to some people, the Juvenile Diabetes Foundation International (JDFI) does not exist to fund research. It exists in the belief that its efforts will help bring about an end to the disease, to discover a cure. Toward that goal, research is a means, not the end itself. We use our funds — our donors’ funds, your funds — to support the best research because it represents the major hope for prevention and eradication of diabetes and its devastating consequences.

We are fully aware that the most exacting bench research, the boldest clinical trial, the most promising technology mean nothing if the result is not ultimately a cure for the disease. That’s why all of us who are involved with JDFI and its work have committed — and recommitted — ourselves to the search for a cure.

On the following pages, you will walk a pathway into the hearts of people who play special roles in this search.

Here are the voices of some of the parents who, on hearing the disheartening diagnosis of a child’s illness, helped create JDFI and who continue to lead the organization today…

some of the parents who, confident that their stricken children and others like them can be helped, work as volunteers to provide guidance…some of the many researchers who, certain that science will ultimately produce the sought-after cure, work tirelessly toward that end…some of the countless JDFI private and public partners whose contributions make the scientists’ research possible. Finally, here are the voices of some of our many members and friends around the world who believe in and share our goals.

One goal, actually. To be known, together, as the people who cured diabetes.

The leadership of parents of children with diabetes led to the founding of JDFI, and sustains the organization today…The mold for the Juvenile Diabetes Foundation International was cast by the personal, passionate commitment of our founders. That same fierce covenant motivates today’s volunteer leadership and keeps us focused on the only thing that is important: a cure.

Take, for example, the words of Carol Lurie, a founding member of JDFI and still an active volunteer 27 years later. "I remember the day my son Steve was diagnosed the way I remember Pearl Harbor," she says, "as a day that would change everything forever. It was thirty years ago, and he was at summer camp. Looking back, I realize I had missed the now-so-obvious symptoms: the relentless thirst, the frequent urination...."

Carol’s reaction to her son’s disease was typical of how JDFI’s parents respond — sometimes, as she says, "as a means of self-preservation" during those initial days and weeks while the significance of the diagnosis sinks in, but then, with an inflexible commitment to play their part in the search for a cure.

"We learned about the young organization JDFI and its visionary founder Lee Ducat, and we became determined to help it grow," says Carol. "We worked and watched as government took its place as the major funder of diabetes research. And looking for additional support, we went to both individuals and major corporations. We had one aim: to try to make life better for our child and others like him."

Thinking back on her efforts, Carol smiles. "Twenty-seven years isn’t a long time in the history of scientific research, but it can be a lifetime if your child has diabetes."

At JDFI today, the new generation of leadership is no less passionate in its commitment.

"I have to search deep in my memory to recall what a life without diabetes is like," says Sandy Silvestri, a member of the JDFI Board. Her awakening to the affliction came suddenly some five years ago when, on a November morning, she could not rouse her two-year-old son from a deep sleep. "We drove to the emergency room with Joey in my arms," she says. "He’d been sick for a few days, and a doctor had put him on antibiotics. Only when he slipped into a coma did we find out what was really wrong. That day changed everything in our lives, which have been ruled by diabetes ever since."

Sandy explains that she once asked a researcher who himself had diabetes what he considered the most serious complication of the disease. "He told me it was the minute-to-minute demands on his mind, the accounting for diabetes, no matter what else he was doing."

"For him," she comments, "as for us, diabetes always has to come first."

The same holds true for all of us at JDFI, diabetes — and the search for a cure.

Naturally, as parents of children with diabetes, those volunteers who ensure the research we fund meets our mission take their responsibilities personally…With an understanding that only a parent can have, these volunteers support the researchers striving to end our search for a cure. Theirs is a natural dedication. There is no greater force than the passion of the people who not only desire a cure, but who need a cure.

Take Emily Spitzer, for example, who serves as the volunteer Chair of Research for JDFI, and whose daughter, Rebecca, has diabetes. "My daughter," says Emily, "often asks if what I’m doing for the foundation will make her life better.

It’s a question that I ask myself constantly, and I ask it of our researchers as well. By asking, it’s easy to keep in mind that we’re not in the business of funding science for the sake of science. We want answers, for my daughter and for others’ sons and daughters. We don’t want studies — but interventions that prevent diabetes, maintain normal blood sugar, prevent complications."

With the full realization that answers do not come without expense and effort, JDFI recently assembled a Research Task Force to evaluate all current research in diabetes, along with our research funding. A process called "mapping" will help us to determine where JDFI dollars should go, whether there are substantive areas in which we should concentrate, and the funding vehicles that we should use to achieve our mission. The results will aid us in moving to the next step, taking research from the laboratory bench to the patient’s bedside.

"Rebecca and others like her must live with all the terrible complications that diabetes brings on, all the while taking insulin and pricking their fingers day in and day out just to stay alive," says Emily. "So when she asks if what I’m doing will help, it’s desperately important that I’m able to answer, ‘Yes.’"

The new JDFI endeavor to "map" research quickly became a full-time concern for volunteer Sandra Puczynski. Her qualifications as an expert in the field made her an obvious choice — a doctorate in clinical research, experience as a diabetes educator, and membership on the JDFI Lay Review Committee. But add to those a passion, a dedication that springs from the fact that her 13-year-old daughter, Michelle, was diagnosed with diabetes before she reached her first birthday.

"This is a complicated disease, and research dollars are limited," Sandra says. "Already, the ‘maps’ we have prepared are being studied by a task force drawn from the worlds of academia, industry, biotechnology, and the National Institutes of Health. The aims are to identify gaps and define new opportunities that are logical and have the highest likelihood of success. We believe it’s a priority-setting approach that will help us spend wisely to move science forward."

Who can doubt that for Emily and Sandra, the search for a cure is personal? They bring to their roles a commitment that is common to all those who live with the disease. Such commitment is the foundation of JDFI’s success thus far, and the key to improving the quality of life for people with diabetes — today, tomorrow, and the day after.…

Voices of professionalism blended with passion: the research scientists whose work JDFI believes — knows — will lead to the cure…As we prepare to take the lead in pushing research from bench to bedside, from the laboratory to the doctor’s office, our focus must intensify. We must identify the obstacles, the gaps in our knowledge which hold our progress back and seek to overcome them. We must choose the most likely paths to a cure for diabetes and its devastating complications, and speed our way down these paths.

With us, along what we hope will be the last stage of our journey, will be our most important partners — our researchers. "When we began our search," says S. Robert Levine, M.D., a member of the JDFI Board, the Research Committee and Chair of the Government Relations Committee, "we knew very little about the causes and consequences of diabetes. But 27 years of research progress have added greatly to the diabetes knowledge base. We are now on the threshold of a cure, ready to move research advances from the laboratory bench to our loved ones’ bedsides."

Dramatic clinical breakthroughs? They will come in beta cell replacement, preventing and treating complications, arresting the progress of the disease, as well as in early detection and disease prevention.

The key to success in beta cell transplantation is to convince the body to accept foreign cells, according to Ali Naji, M.D., Ph.D., at the Hospital of the University of Pennsylvania. Dr. Naji, Chairman of JDFI’s Medical Science Review Committee and Medical Advisory Board, is one
of the researchers examining this problem. Some transplantation sites in the body are "privileged," that is, shielded from the immune system. One of these privileged sites, the thymus, is responsible for teaching cells in the immune system the difference between "self" and "non-self." Dr. Naji believes that if islet cells could be successfully implanted in the thymus in order for the immune system to recognize them as self, then they could be placed elsewhere in the body and not be attacked. In addition, the patient would not have to take immunosuppressant drugs, which can have adverse side effects.

Already, scientific pioneers have returned with assurances that their efforts will bring real help to real people. Leonard Harrison, M.D., of the Royal Melbourne Hospital in Victoria, Australia, cites tremendous progress in immunology research that can lead to a number of areas of prevention. An example he points out has the potential for blocking the self-destructive immune response.

"Insulin is the target of the auto-immune attack in diabetes," Harrison says. "We have found that if we deliver insulin back to an individual who is at risk for diabetes, it induces a protective immune response. The response in turn blocks the destructive immune response that is destroying the insulin-producing beta cells in the pancreas."

"We have seen that tight control of blood sugar is very important to reduce or prevent complications," says Arthur Rubenstein, M.D., Department of Medicine, University of Chicago Hospital, "but complications still occur, despite control. So it is important that we introduce as fast as we can treatments to prevent and treat heart disease, kidney disease and eye disease. Already, there are new drugs in use or development that will forestall kidney disease and that will enhance nerve growth and stability. Beyond control and the treatment of complications, we have also seen dramatic advances toward the cure of diabetes through transplantation. There are many important avenues that should lead rapidly to improving the lives of people with diabetes."

There is also hopeful news in the field of genetic research, this from John Todd, Ph.D., Professor of Human Genetics at Oxford University: "We are certain that a child who develops diabetes does so because of a genetic susceptibility," he says. "An unknown series of environmental factors triggers it. Now, we are beginning to pinpoint the susceptibility genes. As we assemble the genetic jigsaw, we will be able to work out ways to block their effect."

For some 27 years now, JDFI has been uniquely successful in harnessing the discipline of science to our members’ passionate belief that a cure can — and will — be found. To speed the discovery of a cure, we ask that the scientists funded by the organization continue to share that passion.

The passion of parents of children with diabetes extends beyond neighborhoods, beyond borders and boundaries…Today, JDFI is everywhere, united by its members’ single-minded quest for a cure. Bridging oceans and political boundaries, culture and languages, the organization takes strength from its ever-renewing commitment to the children and adults with diabetes.

In Melbourne, Australia, Sue Alberti vividly recalls the day when a child in her family circle was diagnosed with diabetes. "It was July 13, 1982." The onset of the illness led to Sue’s present positions as a member of the JDFI Melbourne chapter and of the Australian board, and a member of the International Board. She was a 1997 recipient of the Order of Australia Medal.

In Piedmont, North Carolina, Anne Hummel has a simple explanation for her decision to become a co-founder of the Piedmont Triad Chapter of JDFI: "I wanted to make my daughter’s life better," she says. Following the grim diagnosis for her 12-year-old, Anne found help at the other end of our information hotline, 1-800-JDF-CURE. Since then, she has helped build a dynamic chapter that provides much-needed funding to fuel the search for a cure.

Buff Perry, co-founder of the Piedmont Triad Chapter, along with Anne, also speaks matter-of-factly about her decision to devote untold hours to the effort. "My daughter, who is 25, has had diabetes since the age of six," she says. "When she was small, I felt I was waiting for someone else to do something about the disease. Now I’m doing something about it."

Across the Atlantic, in Liverpool, United Kingdom, Anne Burrows similarly acknowledges that "I realized I had to do something for myself and my daughters," and the "something" was to become involved with JDFI. Anne’s daughters, Emma and Lucy, who are now 20 and 13, respectively, developed diabetes before their first birthdays. Notes their mother: "The work of the Juvenile Diabetes Foundation International showed me that Emma and Lucy did have futures — ones that have been made brighter by research."

In Toronto, where he serves as vice president of the JDFI Canada Board of Directors and president of the Toronto Chapter, Vince Brewerton relates that a routine annual physical led to the diagnosis of his own diabetes at age 33. The former management consultant considers himself fortunate in that "if I had to have diabetes, I’m lucky to have it now that research has made a lot of progress, and there’s more to come."

In Portland, Oregon, attorney Katherine Cowan, whose six-year-old daughter was diagnosed with diabetes two years ago, is President of the Board of the Greater Portland Chapter. She says, "The appeal of the Juvenile Diabetes Foundation for me has been its focus on research. And our Government Relations work helps keep the research going."

These and thousands of other people throughout the world are united by sharing the founders’ overriding vision of the role of the Juvenile Diabetes Foundation International.

A cure, and nothing less.

Speaking with a single voice, JDFI private and public partners produce progress in research that will end the search…No one needs to be told that the critical element in JDFI’s search for a cure is the wondrous combination of private and public partners who provide the dollars for research. Initially, many of the private individuals and government agencies who come to our cause might sign on for various reasons, but they stay for one reason alone: they want to help us find — or fund the search that finds — a cure.

"Diabetes is the single largest chronic disease represented here at Carolina Healthcare System’s facilities," says CEO Harry Nurkin, Ph.D. "We’re committed to improving the long-term future of our patients, and diabetes is counter-productive to that goal.

"A former chapter president pressed us into service to support a local Walk to Cure Diabetes," Nurkin says. "After a marathon round of meetings and pep rallies, I learned just how widespread diabetes is and how it affects families and friends."

Likewise, David Vandewater, Chief Operations Officer of Columbia Healthcare Corp., fell into a Walk to Cure Diabetes commitment made by a departing executive. "The Juvenile Diabetes Foundation’s Nashville staff gave me all the information I needed," he says. "and made me feel completely at home. I didn’t think the Nashville target was enough of a stretch, so I raised it. Seven hundred employees walked last year."

A friend whose granddaughter has diabetes asked Garnett Smith, President of Advance Auto Parts, to attend a Walk to Cure Diabetes campaign breakfast. He went along, and some of his employees went with him. "When we returned from the meeting and began to talk with other Advance employees, we found that many of them have a family connection to diabetes. One of our managers participated in the Walk with her daughter, who has diabetes. I walked with them, and the five miles carried an education with it."

Before my involvement in the Walk, I had only a vague understanding of how devastating this disease is for children, and that every child is potentially at risk," says Lynn Horak, President of Norwest Bank of Iowa. "After we became involved, people began coming up to me saying, ‘my child has diabetes.’ Those people and their children are my customers and future customers, and I need to do what I can to help find a cure for the disease that controls their lives."

In addition to our private partners, our public partners have worked with us to revolutionize a search for a cure. "The Juvenile Diabetes Foundation International did more than promote groundbreaking research when it established its The Only Remedy Is A Cure Campaign," says Sherry Benaroya, Campaign Co-chair. "It pioneered a unique partnership with government, leveraging private research dollars by stimulating increased spending by federal agencies."

Today, the organization collaborates closely with four institutes of the U.S. National Institutes of Health, and has developed new relationships with the Department of Veterans Affairs and the Medical Research Councils of Canada and Australia. And throughout the world, the search for a cure has picked up speed as public partners join in melding public and private energies and dollars.

"The bridge between the research bench and the patient’s bedside is the next major step toward a cure for diabetes," said Kenneth W. Kizer, M.D., M.P.H. Under Secretary for Health of the U.S. Department of Veterans Affairs, in an interview with Countdown Magazine, the diabetes research publication of JDFI. "We need to form a link to clinical practice, to bring hope and help to individuals with diabetes." He views the innovative public/private partnership between JDFI and the Department of Veterans Affairs as "a creative and effective way to enhance critical diabetes research efforts."

Creative. Effective. These are the kind of words that an organization such as ours enjoys hearing, wants and needs to hear. But everyone who toils at JDFI, whether for a few moments or hours or through long days or longer years — and everyone who dreams at JDFI—is aware that such words can only be possible because of our private partners, who themselves keep two other words in mind: Personal commitment.

These words, believed in by all of us, will help bring about the end to our search. They’ll help bring about a cure.

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