The Juvenile Diabetes Research Foundation

Since writing my first blog for this series on charities and volunteer organizations, I put out a call to my friends asking what causes are close to their hearts.  Of the responses that I received, one that stood out was the Juvenile Diabetes Research Foundation.  My friend Jim is very active with the Triangle/Eastern North Carolina Chapter based in Raleigh.  For that reason, I am going to cover them next.

If you go to their website, www.jdrftriangle.org, you will find a wealth of information about the local chapter’s activities, events and fundraisers as well as how to donate and volunteer.  From walks and runs to galas and golf classics, there are many ways to get involved.

From that site you can follow the link to the website for the national organization.  There you can learn how the money is being used for research and education.  The JDRF is the largest fundraising organization for research focused on finding a cure for Juvenile Diabetes (also known as type 1 diabetes) and its complications.  Last year they raised $156 million in funding for this research according to their 2008 annual report.  Also according to the information on the first page of this report:

Since its founding in 1970 by parents of children with type 1 diabetes, JDRF has awarded more than $1.3 billion to diabetes research, including more than $156 million in fiscal year 2008. In fiscal year 2008, the Foundation funded more than 1,000 centers; grants in laboratories, hospitals, and industry; and fellowships in 22 countries.

For those of you unfamiliar with what type 1 diabetes is, I will give a brief description.  Although it is referred to as “juvenile diabetes,” type 1 can occur at any age.  It happens when the pancreas produces little or no insulin.  While the cause is uncertain, it is believed that the body’s immune system starts destroying the cells that produce insulin.  For that reason, people with the disease must inject insulin several times daily.  Just the injection process can make for a difficult life.  What makes it worse for those people is the potential for complications that can be caused by type 1 diabetes including small blood vessel damage to the eyes and kidneys and heart disease among others.  

I spoke with Jim Chapin, a friend whose son Ryan has juvenile diabetes about how his family got involved with the Juvenile Diabetes Research Foundation, and I learned much more than I could have if I had done nothing more than view the organization’s website.

Like most parents, Jim and his wife Lorraine didn’t jump to a diagnosis of diabetes when their son first started showing symptoms of the disease.  In August of 2006, when Ryan was 3 years old, “he was potty trained… and a lot of the symptoms for type 1 are excessive thirst and frequent urination, sweating… after he had been potty trained, at night he would beg for water before bed.”  In an effort to avoid bed-wetting incidents they tried to say “no” to the water, but he was dying of thirst.  So they’d give him water and he would wet the bed.  They tried to break the cycle and stopped giving in to the requests for water, but he would still wake in the middle of the night and have accidents.  After a couple of weeks Jim and Lorraine looked up the problem and webmd and saw that diabetes could be the cause. 

Jim continued, “So we made a doctor’s appointment and took him and told them what was going on.  They took his blood sugar there and he was over 300.  For a normal person, we’re like 100, 80, 110, 120 - somewhere in that range.  So he was about 3 times as high as he should have been, and they were very serious at the time, ‘You gotta go.  Pack your bags.  You’re going to the hospital right now.  You gotta go.’ And that’s how we were introduced to diabetes.”

Jim pointed out to me that he considers his family lucky that they caught the disease so early.  Older children and teens often have symptoms present in much more dramatic ways including comas.  Jim tells me that in 2006, Wake County did not have a full time endocrinologist.  (I was shocked to hear that.)  There is one now.  At the time, the family’s only choice was to go to Duke.  Thankfully, he tells me “Wake County does now have a full-time endocrinologist. And Wake Med has ramped up their entire pediatrics clinic.”  Things have improved a great deal in the past few years for the better.

“There’s a huge population of type ones in the Triangle that for a long time were kind of like this subculture of… you know… with unknown problems and there wasn’t anybody out there helping you and you were just kind of like on your own.” 

Now Jim likens the JDRF network in the Triangle to a family that shares emails, has get-togethers and celebrates together.  “We’re all out there and every body shares stuff and ideas and tips.”  There is an enthusiasm in his voice when he talks about it. “It’s actually kind of fun,” he says.  “Ryan has a lot of buddies his age that goes through the same things he does.  It’s a good thing for him.”

There is a constant vigilance necessary as a parent of a child with juvenile diabetes.  Jim tells me that it is like having the disease himself as far as always needing to manage it for “kids who don’t know how to do it themselves and without it they die, or could die, or wind up in serious condition.” 

When asked why other people should donate, volunteer, or take part in a walk, Jim had an answer with a twist to it that I didn’t expect.  He told me “I think that JDRF is unique in that our mission is to frankly go out of business and search for a cure.  The goal one day is to have a cure and not exist in that capacity.”  The way to reach that goal is by doing the research that the JDRF is famous for worldwide.  The organization is also unique in that of the funds that they raise, over 85% go to the research that will lead to a cure and, until a cure is found, find ways to make living with type 1 diabetes easier.  All of the fundraising is done by volunteers, which are mostly made up of families living with the disease.  A third party company ranked JDRF nationally in the top 5 non-profits for efficiency for that reason.

I could honestly share much more from my conversation with Jim as well as personal stories of my own having had a few friends with juvenile diabetes, but I will conclude here.  I hope that this blog has opened a few eyes and inspired some involvement with this organization. 

As always, I am open to suggestions for more Triangle Charities and Volunteer Organizations.  Please let me know if there is one that you’d like to see covered here.