Jill Rothman’s daughter, Alyssa, was diagnosed with type 1 diabetes (T1D) in 2011. In search of community during that time, she found JDRF and support from families just like hers. Over the years, she has taken on nearly every volunteer role at the chapter. This year, she is stepping into a lead volunteer role where she will assist in managing volunteers chapter-wide. Jill’s story is one of support, strength, and the friendships she’s built here over time. National Volunteer Month serves as a reminder that the work we do to fund life-changing breakthroughs in T1D research couldn’t be possible without people like Jill in our community. 

 

What is your T1D story?

Our daughter, Alyssa, was diagnosed with T1D on January 3, 2011, one month before her 11^th  birthday. She was training for a regional Irish dance competition, sometimes practicing 6 days a week. We attributed complaints of fatigue to her rehearsal schedule. She then started to lose a little weight. Again, we thought it was due to the rigors of training. After the competition she took a month off, yet we noticed that she was constantly tired, losing more weight, drinking a lot of water, and going to the bathroom much more frequently. When she told us she “can’t quench this thirst”, we knew something was wrong. My husband and I knew the signs and symptoms of T1D because my husband’s dad also has T1D. In our minds we both knew what her diagnosis was going to be, but we prayed that we would be wrong. When she saw her pediatrician, her blood glucose was 579 and she was sent straight to the hospital.

 

How did you get connected to JDRF?

While Alyssa was in the hospital we all began our T1D education. We were visited by a nurse educator, dietician, and social worker. We were overwhelmed with the amount of information we needed to learn about taking care of a young person with a life-threatening disease. We wanted to get involved in the T1D community as a way to learn from other people and also to find support from people living with T1D. A nurse mentioned JDRF and suggested we reach out to our local chapter. Alyssa’s biggest fear at the time was that she would not be able to dance again. Once she was convinced that T1D wouldn’t slow her down, she decided that she wanted to do something to raise money for JDRF. Two of her dance teachers have family members who have T1D, so she approached them about organizing a fundraiser. Five months later, the first “Dance For A Cure” was held with over 100 dancers. Dance For A Cure continues to be an annual fundraiser by her Irish dance school.

 

What made you stay involved with JDRF?

We were asked to volunteer at a walk kickoff at Six Flags. That was my first experience with most of the staff and I was quite surprised by how much they all loved what they were doing. The energy and excitement of the walk teams and the anticipation of the upcoming walks was amazing; I knew I wanted to become more involved with this community of people. I started to attend monthly meetings that JDRF organized in my area with other parents caring for children living with T1D. Over the years I served on the Board of Directors; Outreach Committee, where I served as an Outreach Volunteer and helped develop the Youth Ambassador program; and volunteered at several galas and walks. I stay involved with JDRF because of the relationships I have made and the work we do for those living with T1D.

 

How has JDRF impacted your life?

The JDRF community is one of like-minded people. We understand and support each other during the toughest challenges. We have a mom’s group in my town that meets monthly to check in with each other. Since our T1D’s are in grade school through college we are able to help each other through the transitions that we, and our kids, go through. We help each other when supplies run out, offer advice and support when someone needs it, and our kids help and support each other. There’s a comradery between people I meet through JDRF whether I’ve known them for a day or for years. These people have profoundly impacted my life and continue to do so.

 

You have volunteered in basically every role within JDRF and now you are assisting with leading the volunteers within the chapter. What are your goals for this leadership role?

As a volunteer I want to feel that what I do contributes to the success of what we are working on, whether it’s Gala, a walk, or a tabling event. I think it’s important to honor someone’s commitment of time and energy when they are volunteering. It is my goal to help make the volunteer experience fulfilling and meaningful for people who are so generous with their time and talent.

 

What about JDRF are you most excited about?

I am most excited about research JDRF is funding, including treatments and advances in technology that will help ease the burden of living with T1D. We have seen incredible strides in technology since Alyssa was diagnosed 8 years ago and we look forward to seeing what the next decade brings.

 

What advice would you give to someone just newly diagnosed?

My best advice when someone is first diagnosed is to let yourself grieve. Give yourself and your family a few days to work through the incredible feelings that come with this diagnosis. It’s not fair, it’s not fun, it’s not easy. Then move on. This is a lifelong disease and it does not go away (yet!). Encourage the person with T1D that you care for, to assume as much responsibility for his or her own care as is appropriate. They need to feel empowered and learning to take care of themselves is essential. Learn as much as you can, rely on people who want to help you, get involved with support groups, attend lectures, and attend JDRF events where you will meet people just like you. Don’t make T1D the focus of someone’s life. They have much more interesting things about them!

 

What does a cure mean to you?

A cure would mean the end of watching our daughter have to live with T1D. It would mean the end of seeing the marks left behind on her body from sets and sensors. It would mean the end of watching her be pat down at the airport and have her supplies tested for explosive residue. It would mean the end of worrying when her Dexcom low alert goes off during the night and she’s 225 miles away at college. It would mean the end of worrying about her eyesight, kidneys, and vasculature later in life. It would mean a healthier and care free life for her. Like life before T1D.

 

Are you interested in volunteering with JDRF? Learn about all of our upcoming volunteer opportunities by calling our office at 732-219-6654 or at newjerseymetro@jdrf.org/