PHILADELPHIA, March 15 When Lee Ducat, founder of the Juvenile Diabetes Research Foundation (JDRF), brought together a group of Philadelphia-area parents of children with juvenile diabetes on May 21, 1970, she could never have imagined that 40 years later that devoted group would have grown into an international organization that changed the world.
What started as a mother's vision to help her child has evolved into a foundation with more than 115 chapters in the United States, and seven affiliate chapters throughout the world, dedicating $100 million per year to diabetes research. Today JDRF has affiliates in Australia, Canada, Denmark, India, Israel and United Kingdom.
Forty years since that first meeting, Ducat will be honored for her vast accomplishments at JDRF's annual Promise Ball, on May 22, 2010 at the Loews Hotel in Philadelphia.
The JDRF Story
Lee Ducat's son, Larry, was diagnosed with diabetes at age 9, at a time when insulin was injected twice daily through thick needles, and urine tests did not yield blood sugar levels until 24 hours later - too late to do much good. Ducat and others at the time did not know that diabetes had devastating complications including blindness, kidney failure, cardiovascular problems and amputation.
"In those days, very few people knew that children came down with diabetes. I certainly didn't know it," recalls Lee Ducat, founder and past president of JDRF. "One day you have a perfectly normal, healthy kid, the next day you find out he has a chronic disease that changes his life forever. For the longest time I walked around in a blur. I could hardly see through the tears."
Ducat knew she had to do something. No one had ever started a grassroots organization for juvenile diabetes research before, but Lee Ducat was determined.
"We didn't know if we could raise a penny when we started; we just went on instinct," she said. "Our only goal was to grow the organization."
In 1970, diabetes was a virtually unknown and misunderstood disease. Ducat served as a catalyst in revolutionizing diabetes research and gained international exposure for the disease as well.
"Diabetes was widely known, but it was not known that little children could get diabetes. I wanted to start a new organization that would help cure the disease," said Ducat. "Now, 40 years later, we have a global organization devoting at least $100 million per year to research for new drug developments, new treatments and to design a path for the cure."
In JDRF's first year, funds raised totaled $10,000, which they gave to a research project at Children's Hospital. Since 1970, more than $1.4 billion has been funded to diabetes research from JDRF.
Today, in more than 100 locations worldwide, JDRF members are the living force carrying on Lee Ducat's dream to fund research toward a cure. JDRF leads the world in supporting Type 1 diabetes science with funding at nearly $101 million in 2009.
NDRI - 30 Years Connecting Scientists with a Continuous, Reliable Source of Human Biomaterials for Research
Ducat went on to create a new paradigm for medical research when she founded NDRI, the National Disease Research Interchange, in 1980.
Thanks to NDRI, which serves scientists with human biomaterials consented for research studies donated from surgical procedures and post-mortem, more than 300,000 human biomaterials that once were trashed, incinerated or stored in formaldehyde became a national resource for researchers on the cutting edge developing new treatments for diseases that impact millions of people around the world.
"NDRI plays a critical role for scientists looking for new treatments and cures," said Ducat. "People can donate tissue and help research while they live."
More than 20,000 human biomaterials of all types come through the NDRI program each year and are matched to the protocols of some 500 researchers at 245 centers. The NDRI database of participating researchers has grown to be the largest in the world of researchers studying human tissue. The NDRI repository holds more than 400,000 samples.
In 2010, NDRI remains the leading national organization to connect human tissue, critical clinical data and donor medical histories with the research scientists who are working on new therapies and cures for human diseases.
"NDRI has transformed the attitude of medical scientists from ignoring the use of human tissues in research to one of requiring these tissues for the study of human disease," said Paul Lacy, M.D., Ph.D. "New and important findings would not have been made in the absence of this unique organization."
NDRI has been funded continuously for 24 years by NIH and was recently awarded a new five-year grant to continue its programs.
HBDI: Pushing to Find the Type 1 Diabetes Genes
At a scientific symposium in Monaco in the mid-1980s, the idea for HBDI, the Human Biological Data Interchange, was born. At that meeting, scientists had heard about the important work NDRI was doing to provide pancreas and other tissues for diabetes research. Scientists needed families to study to help find the Type 1 diabetes gene.
Lee Ducat, NDRI and JDRF moved forward to fund and establish a new genetic resource for Type 1 diabetes research -- HBDI. Throughout the next decade, HBDI family recruitment led to the creation of the largest registry of patients with Type 1 diabetes and their families for research including nearly 35,000 primary members and over 100,000 extended members of 6,700 families affected by Type 1 and/or 2 diabetes as well as control families.
"You need a huge collection of families to do these studies," said David Greenberg, M.D. "That is why the HBDI/NDRI collection is so unique; 6,700 families is a resource that cannot be duplicated anywhere in the world."
HBDI families still hold secrets ready to be discovered. Because these families have been tracked for up to 20 years, the HBDI resource is the oldest registry of families with Type 1 probands.
The mission of JDRF is to find a cure for diabetes and its complications through the support of research. Type 1 diabetes is a disease which strikes children and adults suddenly and requires multiple injections of insulin daily or a continuous infusion of insulin through a pump. Insulin, however, is not a cure for diabetes, nor does it prevent its eventual and devastating complications which may include kidney failure, blindness, heart disease, stroke, and amputation.
Since its founding in 1970 by parents of children with type 1 diabetes, JDRF has awarded more than $1.4 billion to diabetes research, including $101 million in FY2009. In FY2009, JDRF funded research projects in 22 countries throughout the world, including more than 40 human clinical trials. For more information about JDRF, please visit www.jdrf.org.
The nonprofit NDRI (National Disease Research Interchange) was established in 1980 to provide scientists with the human tissue necessary to study human systems and human disease. In the past 20 years, NDRI has served some 5,000 scientists with more than 300,000 human biomaterials, leading to more than 2,500 papers published in scholarly journals on diseases from diabetes to cancer to HIV and rare diseases.
Funded in part by the National Institutes of Health (NIH), NDRI provides biomaterials to more than 200 of the nation's most prominent academic-based research centers including the Harvard Medical School, the Massachusetts Institute of Technology, Mt. Sinai School of Medicine, Stanford University, and Thomas Jefferson University, among others. NDRI also provides tissues to government agencies and grantees including the NIH, the U.S. Food & Drug Administration, the U.S. Department of Agriculture, The Centers for Disease Control, and to some of the nation's top pharma, biotech and R&D programs. For more information about NDRI, please visit www.ndriresource.org.
SOURCE Juvenile Diabetes Research Foundation