Barbara became a fierce advocate for JDRF after her son, Brad, was diagnosed with type 1 diabetes (T1D) at the age of seven. She is one of her chapter’s Advocacy Committee Leaders – most recently she was a key point of contact in working with local assembly members to designate the Monday before Thanksgiving as “A Day in the Life – Type 1 Diabetes Day.”

She is also an all-around JDRF volunteer superstar, having coached riders, who bike up to 100 miles in order to raise money for T1D research, and volunteered at chapter events like JDRF OneWalk and the One Dream Gala. Thank you, Barbara, for all you do to help every person affected by T1D!

 

JDRF: Tell us how you became involved in the first place?

Barbara: My son, Brad, was diagnosed with T1D in August 2003, when he was 7 years old. It was summer time and he was constantly hungry, thirsty, going to the bathroom a lot, and losing weight quickly. At the end of the summer we went to an amusement park with some friends and that’s when I really noticed he was eating and drinking way more than other kids his age. He was about to start second grade, yet he ate more than an adult would. I knew he couldn’t go to school like this, so we went to the doctor. The doctor didn’t even have to prick his finger. He did a urine analysis and sent us straight to the hospital, telling us it was amazing that Brad was still conscious. He spent three days in the hospital. He was assigned to a new elementary school due to redistricting, so he was starting second grade in a new school just one day after leaving the hospital.

 

JDRF: How did you connect with JDRF?

Barbara: While Brad was in the hospital, my husband Jonathan, went home, did a little research online, filled out a form, and told me about JDRF. We reached out pretty quickly and received the Bag of Hope from JDRF. We were informed that there would be a walk, formerly known as the “Walk to Cure Diabetes”, in Avon, which is roughly 30 minutes from where we live. As soon as he was out of the hospital, we knew our family wanted to get involved with the organization. We had friends and family members join us in fundraising during the two months between Brad’s diagnosis and the day of the walk.

 

JDRF: What was your biggest struggle as a parent of a child with T1D and how did you overcome it?

Barbara: It’s all hard. My relationship with Brad became a relationship of managing diabetes. Our conversations were always about what he ate, if he tested his blood sugar and anything diabetes-related. It was a struggle for years to find common ground that didn’t have to do with this disease. Not everyone is going to have these struggles, but it does strain the relationship when you only focus on health. I learned that the healthier you are, the fewer complications you will have. I was so focused on keeping him healthy. I made it my top priority to ensure this, sometimes to the detriment of our relationship.

 

JDRF: How did Brad adjust to managing T1D in college?

Barbara: Brad has been pretty independent since he was 13 years old. I was never concerned with how he would manage his T1D in the mid-west where he attended college. Near or far, I was confident that he would take care of himself the same way he did when he was home. Luckily, he never had a diabetic-related issue while he was away at school. He doesn’t use a continuous glucose monitor, but he is on an insulin pump. I had no idea whether or not he was taking care of himself. Not having control worried me; it worries every parent. But, I was very comfortable with him being on his own because he knew what he needed to do to stay healthy.

 

JDRF: How has JDRF impacted your life?

Barbara: Well it’s interesting, JDRF was really a source of information from the beginning. I found other people who understood what my family was going through. Attending walks and volunteering in a number of areas allowed me to meet people and form the connections I have today. I could not have made these connections anywhere else.

 

JDRF: What made you stay involved with JDRF?

Barbara: I had the opportunity to stay home and be a full-time mom to my son and daughter, who are just three years apart. I often asked myself, “what more I could do?” JDRF was the right organization for me. The annual gala was coming up, so I volunteered. Then, I just kept asking what other projects and events I could work on and how I could help. Very quickly, I was put into a position of organizing volunteers for walks and galas by determining their availability and assigning them to different roles, which I did for a number of years. I was also the president of the board of directors, back when it was a smaller chapter.

 

JDRF: Tell us about your experience with JDRF ride program?

Barbara: I’m a ‘Ride to Cure Diabetes’ coach. It’s a bicycling event that takes place in a number of locations throughout the country each year in the summer and fall. I help people prepare to ride up to 100 miles in one day. Sometimes, I work with individuals who are brand new to biking and help them get comfortable with riding their bikes in preparation for the JDRF Ride. Other times, I work with seasoned riders who want to ride further than they ever have before. Of the six rides I’ve participated in, I’ve been a coach for five of them.

 

JDRF: How did you get involved in JDRF Advocacy? Why is advocacy so important to the T1D community?

Barbara: Without advocacy and proper funding, critical T1D research would stop. I was asked to take on the role as the chapter’s Advocacy Team Chairwoman a number of years ago. It is a non-political role, communicating to government officials at a national level and within New Jersey. We communicate how important it is to support funding and the issues that surround T1D. These issues not only affect children, but also adults living with T1D.

 

For example, Medicare did not cover Continuous Glucose Monitors (CGMs) for people over 65 years old and the supplies are very expensive. Advocacy Team Chairs throughout the country participated in letter-writing campaigns and helped communicate to government officials that this technology needed to be covered. The campaigns were successful. Through the Special Diabetes Program, the government funds $150 million in diabetes research annually. We go back to D.C. every year and ask again for support and for the approval of continued funding. Every other year we reach out to congressmen, inviting them to meet families in New Jersey affected by diabetes. My experience is that politicians are more affected by younger people who show them their devices and everyday routine.

 

JDRF: What are some of the projects you worked on? Which project has been your most impactful and memorable?

Barbara: JDRF Government Day is when the Advocacy Team Chairs throughout the country spend four days in Washington D.C.. We get updates on research projects and their status’. We then go to Capitol Hill and meet with congressional leaders, or their health aids, to provide them with these research updates, educate them on the impact funding from the Special Diabetes Program has on diabetes research progress, and why funding must continue for the following year. We try to meet with every congressman and senator. Since I have been attending Government Day, I have heard updates about the TEDDY study. The study collects data from a large group of children with the potential to develop T1D. Scientists will analyze who in the group developed T1D and who didn’t in order to determine commonalities, if there were any, among the different groups.

 

My most exciting advocacy memory just recently happened. I was involved in an advocacy effort that led to the first ever T1D awareness day in New Jersey called “A Day in The Life-Type 1 Diabetes Day,” to be celebrated the Monday before Thanksgiving every year in NJ. It all began last November when assembly members, Eric Houghtaling and Joanne Downing, issued a proclamation to our chapter after the Avon-by-the-Sea walk. They praised us for raising awareness and money for T1D. We decided to thank them for this proclamation. JDRF families were invited to meet and thank them. At the meeting, the assembly members were touched to hear what it’s like to live every day with T1D or to be a caregiver for someone with type 1 diabetes. Realizing that many are not educated about what it takes to live with T1D, they wanted to do more. With the help of the chapter’s advocacy intern, Olivia Cannon, a resolution was drafted. The initial vote was held in Trenton, where a group of youth ambassadors stood up to be recognized just before the vote. It passed. The next step was to ensure Governor Murphy would sign it in time to be celebrated this year. He signed the bill on Type 1 Diabetes Day and he even made a video to help spread awareness for the T1D community. For me, this was very exciting, because I was able to have an integral role in the process.

 

JDRF: What advice would you give to someone just newly diagnosed?

Barbara: I would tell them it gets easier. We always said Brad is not a diabetic, he has diabetes. It becomes a mindset. As a young boy, we never let the disease stop him from doing what he wanted to do, nor has it defined who he is as a person. I also strongly recommend taking advantage of technology to manage diabetes. It will help you tremendously in the long run.

 

JDRF: What does a cure mean to you?

Barbara: A cure means not having to worry about complications down the road for Brad. I worry about what his life will be like in the absence of a cure. For him a cure would mean no more blood sugar testing, carb counting, insulin injecting or concerns about the effects type 1 diabetes may have on his long-term health.