Everyday Hero:
Everyday Heroes is a monthly series recognizing individuals, families or businesses that go above and beyond to serve our local T1D community. 

Chrisie Scott has been part of our JDRF family for years. However, her relationship with the organization started as a professional one, when she worked as a marketing executive for  what is now Hackensack Meridian Health. In her role, which covered community engagement, Chrisie chose JDRF as a charitable partner and attended events such as the One Dream Gala and One Walk.  Her marketing experience allowed her to write stories about chronic illnesses, such as type 1 diabetes and partner with the pediatric patients. It wasn’t until her son, Austin, was diagnosed with type 1 diabetes (T1D) that she fully understood a day in the life of managing the disease. Chrisie recalls spending time balancing the support her 17 year old son would now need, while also allowing him the independence to care for himself. One way she helps her son and millions of others affected by T1D is by serving on our local JDRF Board of Directors to use her skills and voice in order to come closer to ending T1D.  Because she is a warm, compassionate and strategic leader, Chrisie was just recently voted in as President for the New Jersey Metro & Rockland County Chapter by a group of her peers and we are thrilled to share this story of a T1D mom who gives herself selflessly to our mission.

JDRF: Can you tell us about your T1D connection?
Chrisie: New Year’s Eve 2012 hit our family like a hurricane —perhaps a precursor to Hurricane Sandy which really did hit later that same year. Just hours earlier, we were on our way to a family party to welcome in the New Year with our loved ones. My son, Austin, who had just gotten his license that week, had not been feeling well. He had complained of a stomach ache and had retreated to his room for most of the day. When we arrived at my sister’s home, he literally fell out of the car. We got him inside and thought maybe he had come down with a bad case of the flu. Everyone there was taken aback by how gaunt and thin he looked. I was horrified because I hadn’t even really noticed. I mean, I knew he didn’t feel well, but my husband and I hadn’t seen the dramatic weight loss.

When we arrived at the emergency room, his blood sugar was over 900 and he had lost over 30 pounds in just a few weeks. They told us almost immediately that he had type 1 diabetes. I thought for sure they were mistaken. How could they know what he had that fast? As we were waiting for the ambulance to bring him to the intensive care unit at Jersey shore University Medical Center, I remember Googling type 1 diabetes. The funny thing is, working in healthcare, I had written stories about this before. I had interviewed families and I knew what type 1 was. But in the moment, when it was our son, I couldn’t get my arms around what this really meant. It did not seem real. I felt confused and helpless.

Austin was admitted to the intensive care unit suffering from diabetic ketoacidosis. He was in very bad shape and practically in a coma. As I sat with one of the intensivists, he looked at his watch and realized it was midnight. He said, “Happy New Year!” and I remember feeling anything but happy.

Once Austin’s condition stabilized, I distinctly recall when one of the nurses came in to show him how to administer his insulin for the first time. Austin looked at her and said, “So, how long will I need to do this?” The nurse bluntly replied, “Forever.”

Forever!

What does that word even mean to a teenager?

The next few months were a blur of figuring out this new normal. Just a few days earlier, Austin was getting his driver’s license — a milestone that signified a new freedom. But this disease really stifled that perspective. His days were quickly occupied with carb counting, calculations, label reading, finger sticks, needles and worry about how this could ever truly be “normal.”

As parents, we were terrified about our son’s future. How would we get through this? Our family was incredibly blessed and grateful for all of the T1D families who immediately reached out and surrounded us with advice, comfort, and community. They let us know unequivocally that we were not alone. There was so much to learn and so much to think about. We were devastated, scared, and yet determined to move forward as a family. We wanting desperately to believe that “we got this.”

JDRF: Once Austin was diagnosed, how did you become involved with JDRF on a personal level?
Chrisie: After Austin’s diagnosis, I leaned closer into the JDRF community. Ironically, through my work in healthcare, I had already been a regular at the annual Gala and I frequently participated in outreach conversations whenever executive director Jess Backofen would come by the hospital to meet. Shortly after type 1 became part of our family, we rallied and formed our first walk team, Austin’s DiaBEATers. Then, one of the partners from my ad agency in Chicago, invited me to a JDRF research update during one of my business trips. (Her daughter had been diagnosed as a young girl and this colleague had been a great source of information and encouragement along the way.) The guest speaker turned out to be JDRF Chief Mission Officer, Aaron Kowalski. I began tweeting at the event and afterwards met Aaron and realized he was actually from New Jersey, too. Before I knew it, I was being invited to join the board of our New Jersey Metro chapter. Honestly, I was as terrified as I was honored. I still felt like a novice to this entire disease, and yet I knew that Austin and so many other families would be counting on the work of which I would be a part.

JDRF: Congratulations on being the newly appointed JDRF board president. What is your vision in this new role?
Chrisie: Thank you. I am truly humbled to be part of this Board and this chapter at this amazing point in its journey. I am so appreciative of the vote of confidence in me to help provide some leadership and energy over the next year. I truly want to make a meaningful impact on something I otherwise cannot control for Austin, as well as for all of those who wake up every day and courageously deal with all that this disease throws at them. Each board member has an amazing story of their own, for either themselves or their loved one, and to share this mission, this passion, with them feels incredibly inspiring. In life, we usually have our family, our extended family, and our work family. JDRF is yet another family — perhaps one we never wanted to belong to — but one of which we are so very grateful to be a part.

I would be remiss if I did not thank Jess, Rebecca and our wonderful chapter staff for all they do and Kathleen Fitzpatrick for her extraordinary leadership and inspiration over the years. She has set a mighty high bar, and has graciously agreed to stay tethered to me!

They say that the return on investment for volunteering for a mission you believe in is immeasurable. I hope to bring my marketing and communications skills to bear on this role and to lift up our voices collectively so that we can continue to bring attention, support and critical funds to this cause. Engagement is a decision made one person at a time —one heart, one mind at a time. I serve to amplify, to engage, to connect, and to believe.

JDRF: You attended the One Conference in Washington, DC as the new board president. What was that experience like for you personally and as a board member?
Chrisie: Our trip to Washington was enlightening, invigorating and inspiring. Aside from the incredible feeling that we are not alone in our quest to “put T1D out of business,” I would say that I had underappreciated the power of our collective voices. I have never been to Capitol Hill to story tell, to inform or to ask for anything. In my role in healthcare, I have prepared testimonies for physicians, crafted messages around important legislation, even created grass root campaigns to drive action; but to share Austin’s story next to Kathleen who was sharing Fiona’s journey —to tie their faces to our JDRF advocacy and to feel that amidst my helplessness as a mom, there was something purposeful and meaningful that I could do for my son and for all those living with T1D — truly ignited my soul. I am so grateful for that experience.

Also, I was deeply impressed with how much our representatives truly care once they are better informed. An interesting story: Shortly after Austin was diagnosed, the advocacy chair of JDRF asked if he would go with other T1D children and young adults to meet with Cory Booker. In addition to Austin asking who Cory Booker was, he wanted to know what he would have to do. “Just share your story,” I told him. He went with his girlfriend and returned inspired. He told me about how much Cory Booker really listened and promised to remember them all when he voted on various legislation. Cory also took selfies with them, which was a huge hit and made a lasting impression. Well, fast forward to this Washington trip where I recognize the Dad of one of the young girls that Austin shared this experience with. I had Austin send me the photo and we re-told the Cory Booker story, the other Dad and I, right there in the Senator’s office. It was truly a special conversation and one that had everyone leaning in. It is my fondest hope that our stories continue to touch their hearts in a way that inspire them to remember to do the right things — for Austin, for Fiona and for all those bravely and joyfully living their lives despite T1D.

One of the other big take-a-ways from the DC conference, was this notion that amplifying our voices and our stories could accelerate our connections and conversations with more people who care and could help. I think we need to use social media more strategically to spread our messages as well as our opportunities and seek out and connect with more influencers. JDRF advocacy is about relationships. We have to tap into them and find others who will join in and be a part of the solutions and the eventual cure for T1D.

JDRF: If you could give advice to another mom in a similar situation to you what would it be?
Chrisie: I hope this doesn’t sound cliché but I would tell her that everything is going to be OK because of the momentum of research and development and all of the people who are working so hard to find a cure. I would tell her that there is hope, and not just the lucky kind, but the purposeful kind — the kind of hope that has science and advocacy working behind it.

JDRF: What does a cure mean to you?
Chrisie: Oh gosh, a cure would just make my heart sing. When Austin was first diagnosed, he called it his “new normal.” We talked about having a positive attitude and taking things one day at a time. We reminded him that life is as much about what happens to you as it is about how you handle what happens to you. We talked about how everyone has their “something.” This was his something — a very, very big something. But we would also talk as a family and say, “together, we’ve got this.” A cure in this lifetime would mean we really did have this and now it’s gone. What an amazing moment that will be! I look forward to it with every fiber of my being.

For additional information on our Everyday Hero this month or to nominate someone for the Everyday Hero series, contact sdutton@jdrf.org.