By BECKY GILLETTE
JDRF International, the largest non-profit dedicated to research into type 1 diabetes (T1D) in the world, now has Tupelo native Ellen Leake at the helm of its board of directors.
“We have been around for 48 years and we have never changed our mission, which is to cure diabetes,” said Leake, whose daughter, Elizabeth, contracted T1D 23 years ago. “I suspect we will be able to prevent the disease before we cure it. Near term prevention may be something that will get here before the ultimate cure for those living today with the disease. At JDRF, our commitment remains focused on improving the lives of those with T1D today, while advancing new research that will help the community tomorrow and prevent the disease for future generations.”
T1D is type of autoimmune disease in which the pancreas stops producing insulin, a hormone that enables people to get energy from food. It occurs when the body’s immune system attacks and destroys the insulin-producing cells in the pancreas. According to JDRF, while its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved. Its onset has nothing to do with diet or lifestyle.
Leake first had a career in technology, working for IBM for 25 years before leaving to manage Splinter Creek Land Company.
“It was great to be in technology in that period of time,” she said. “Today I’m managing Splinter Creek Land Company, which is doing an upscale residential community on about 750 acres around three big lakes in Oxford. It is brand new development and we are really thrilled with the first phase of it. In fact, we just had a great article written about us in Garden and Gun magazine.”
Leake currently spends about half of her time in Oxford, and the other half either in Jackson or traveling for JDRF, which has offices in each state. JDRF has directly funded more than $2 billion in scientific research while generating an additional $3 billion in private and government research investments.
Leake said her goals as chair of JDRF include raising more money to fund more clinical trials.
“The idea of bringing new therapies and drugs to the patient is front and center,” she said. “In addition to fundraising, my other main goal is to engage more people living with T1D. That is why I travel so much. I think we have locations in every state and six countries outside of the U.S.”
Her daughter, Elizabeth, was diagnosed with diabetes when she was only 10 years old.
“It was a shock,” Leake said. “It is the same for every family. About 85 percent of us have no family member with the disease, so it comes like a ball out of left field. There is no preparation. There is not much you can do about it but figure out what the new normal will be. It is painful. You think your child might not be able to do things. Elizabeth was a great athlete, and the first thing we wondered was if she could still play soccer. She loves to hike. But you have to get on with your life. It was that way for us and I’m sure for every other family who confronts the same thing.”
Although needle pricks to check blood sugar levels and insulin shots were part of the new normal, Leake said Elizabeth was able to be physically active and continue the activities she loves. Recently she even was able to have a baby.
When Elizabeth was diagnosed in 1994, the endocrinologist predicted T1D would be cured in 10 years.
“In the 1990s, we thought a cure was just around the corner,” she said. “The more we have learned, the most complicated the disease is. But it is important to realize that we have technology now to ease the burden until the cure comes. I can see Elizabeth has an easier life with the tools available today than I could ever have imagined during that first week or two of diagnosis.”
Of 30,000 people in the U.S. diagnosed with T1D each year, about half are diagnosed as adults. Leake said that is why they have tried to get away from the name Juvenile Diabetes Research Foundation, and instead are known by the anacronym JDRF.
One device Elizabeth is using that has helped her better manage her disease is Medtronic’s MiniMed 670G hybrid closed loop system, which consists of an insulin pump with tubing, a continuous glucose monitoring (CGM) sensor inserted under the skin, and a transmitter worn on the body.
“The two devices have been connected through software that manages insulin delivery,” Leake said. “Medtronic called this a hybrid closed loop because insulin injection is based on readings from the CGM. The pump calibrates based on glucose readings. It is not fully automatic. You still have to count your carbs when you eat and factor those in. But the CGM allows you to be more precise and helps avoid high and lows in blood sugar levels. Software helps automate that whole process.”
Leake said this has been a major advance for a couple of reasons. First of all, the U.S. has traditionally been behind Europe and Australia getting devices approved.
“This time we leap frogged Europe, Australia and Canada,” Leake said. “It was approved by the FDA in November 2016 and hit the market April 2017. The U.S. was the first. That was huge because it indicates the FDA really understands how important the technology is for people living with T1D. The other reason it is so important is it reduces the daily burden. That is something front and center to families. That is a huge milestone.”
In addition to research, patient advocacy is also important. So, there is a whole group with JDRF that works on advocacy.
Congress has appropriated $150 million per year since 1998 into diabetes research. Leake said the government has funded almost $2.6 billion in special diabetes programs.
“So, they have done some huge studies,” Leake said. “I’d like to see us supercharge the number of human clinical trials and the research that we are funding.”
Leake has held numerous volunteer roles with JDRF and for her many efforts received the Jim Tyree Chairman’s Choice Award in 2015. She and her husband helped formed the JDRF Mississippi Chapter in 1998. At the national level, Leake is a member of the National Institute of Health’s National Diabetes & Digestive & Kidney Diseases Advisory Council and has chaired the JDRF Development Committee (2013-2014), the Lay Review Committee (2011-2012) and the Information Technology Working Group (2009-2011).
To learn more, visit www.jdrf.org.
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