JDRF has a new name!
Dr. Aaron Kowalski, CEO of JDRF announced today a new name: BreakthroughT1D
JDRF no longer reflects the medical reality of Type 1 Diabetes. It is not a disease of only children. In fact about half of new diagnoses are made in those over 18. My son, Brian, is a prime example. He was diagnosed at age 21 and faced a lot of misconceptions. Well meaning folks would challenge him: but you are too old to have Juvenile Diabetes (the old name for T1D). Or others: you are in good shape and you are thin, you can’t have diabetes. Of course they were thinking of Type 2, a completely different condition that is often lifestyle related. Type 1 is an auto immune disease, no amount of lifestyle change can cause it or cure it. Type 1 respects no age limits either.
People living with Type 1 depend on getting insulin everyday. Without insulin they will die. The burden of keeping blood sugars in a normal range is overwhelming. When sugars are too high or worse, too low, they feel terrible, they have to give themselves insulin or sugar to regain balance. Sometimes that can take hours of over shooting or under shooting the target blood sugar. Brian calls it “bolus rage”, the frustration he and many others feel when their bodies won’t respond quickly enough and they yoyo from too high to too low. If they don’t manage their sugars effectively they end up in the ER, with a real emergency.
Breakthrough T1D’s (formerly JDRF) vision is a world without T1D. That is not changing with the new name. The emphasis is on developing the breakthroughs that are needed to fullfill the vision: a cure for T1D. JDRF formed 50 years ago and has become a powerful and influential force in not only finding the cure but also, until there is a cure, improving lives of those living with T1D. They do this by supporting and accelerating research, influencing policy and advancing treatments. It takes a myriad of experts, leaders and volunteers all passionate about finding that cure!
It is not about “if”, it is about “when” the cure happens. New advancements, big and small happen everyday and it is accelerating. We now have an FDA approved treatment (TZield) to delay the onset of T1D for years! We have the ability to make limitless insulin producing Beta cells that can replace those destroyed when T1D stricks. Immunotherapy is advancing rapidly and will be able to protect the new Beta cells from the immune assault that causes T1D in the first place.
I embrace the new name and remain passionate about the research that Breakthrough T1D is driving. I am a Research Information Volunteer and I will continue to keep on top of the breakthroughs that inspire the new name and share that info with you!