We always love to find strong new voices in our Diabetes Community, so today we're thrilled to feature a fellow type 1 North Carolina, Aaron Johnson.
Aaron has lived with T1D for more than three decades since he was just a toddler. He recently left a banking job to dive into the diabetes advocacy universe, building a new non-profit organization in his own corner of the country called Families Fighting Type 1, or FFT1 for short. The aim of this local org is to help "fill gaps that the larger diabetes organizations aren't able to address" in part by raising funds to send some NC kids to D-camp. Aaron has also recently started his own diabetes blog, GlucosEnough.
And on top of all that, he's currently studying for an MBA degree too!
A Chat with Diabetes Advocate Aaron "AJ" Johnson
DM) Thanks for taking the time to talk with us, Aaron! First, can you tell us about your very early diabetes diagnosis?
AJ) I was diagnosed on 12/12/83, and was 15 months old at the time. No family history, kind of a crappy diagnosis too, since the doctors did everything but a fingerstick test for about three weeks. My blood sugar was over 800 when they finally did a test and determined I had type 1 diabetes.
What was it like being diagnosed so young?
Those early years were just me and my mom making it through the 'Dark Ages' of diabetes. That’s kind of the best way I can describe it. I mean, I imagine my struggles weren’t unlike everyone else who was diagnosed around that time period.
There were no CGMs, pumps, and insulin was still piggy. I remember at-home testing was still pretty new. My mom devoted her entire life basically to keeping me alive, and she did an incredible job. I had a great endo and healthcare team, and they basically helicoptered me into my preteen years... then I rebelled against the world.
So you neglected your diabetes as a teenager?
It's always hard for me to answer that question to people because I’m either honest and come off sounding blame-y or indignant, or I just kind of lie or gloss over the issue.
As great of a job as my mom did, her one big hangup (that I can really understand) is she was super-overprotective. To say I didn’t get handed off diabetes gradually is kind of an understatement. She basically took on T1D until she logically couldn’t anymore, and then I was tossed the keys to the car and told to drive. It didn’t go well. It wasn’t really the best long term plan, but hey... I’m still here and kicking. And obviously there's a ton of blame on my end for not being a more mature teen.
Now fast-forward to your founding the FFT1 organization. How did that get started?
It started out with my brother and I, and a few friends in 2015 coming up with an idea for a single-event fundraiser. I was working at Wells Fargo in fraud investigation and a few families came together to plan a large fundraising casino night. I started as the treasurer for the “organization,” before there was even an organization to speak of. And famously, I didn’t want to be involved much because “I was the one with diabetes, I already didn’t have enough time for everything as it was.”
About a year later, I left my job at Wells Fargo and found the DOC, and I got heavily involved and just sort of found my calling. We decided to turn FFT1 into a local Charlotte, NC-based T1D non-profit organization.
The idea was to bridge the gap that the JDRFs and ADAs of the world couldn’t quite fill in our local community.
We did our IRS thing, got 501(c)3 status as a public charity, and drew up some bylaws. That year I took over as president and I’ve been trying to move the organization forward ever since.
Can you share more about what you think is missing from orgs like ADA and JDRF?
I think JDRF is an awesome organization. The purpose they serve is important and they are the absolute best at doing what they do. They’re by far the best fundraising organization for type 1, in my opinion. They are great for kids and for newly diagnosed. The problem is, they miss a lot of boxes. They’re not great for adults, they’re uber-conservative, and they’re still super old-school.
When I say I’d love to fill gaps, I’d ideally love to take the Beyond Type 1 sort of mentality and make the reach as large as JDRF. I think we all want that. I once spoke at a JDRF summit about mental illness and was told to “try and keep it positive." Like, what??! How does pretending depression and anxiety are positive help people?
I try to take the sort of new school approach, and talk about “sex, drugs, alcohol, and all the other taboos” that are real life that JDRF won’t address. I mean, we're in Charlotte, NC, and all the cool diabetes stuff happens in California. So when we fundraise locally, we do it right: rather than bake sales and walks, although those are important, we like to get people there who may not know anything about diabetes first, and then get them to donate. To me, to make that happen, you have to make your events a blast!
OK, we totally get that authenticity and fun are important. What are you currently trying to accomplish with FFT1?
What I really want this to be is an organization that can meet all needs for Charlotte T1D families that can’t be met through the large organizations. Think local college scholarships, numerous camp spots paid for, diabetic alert dog placement assistance, and more adult meetups.
Right now, it’s a lot of fundraising and we’re securing some spots at local diabetes camps to send kids.
We have been trying to do some more marketing so people simply know about us. The funny thing is, it’s almost hard to find people to help if no one knows about you. I imagine this is a slippery slope, as once the word is out we’re probably going to be at no shortage of cases where people need a hand. But right now, I get a lot of calls from my contacts at JDRF who have some cases they think I can help with, and I try and help out whenever I can.
Is this what you do professionally now?
I’m currently not at a full-time job, other than FFT1 and pursuing my MBA. I got my undergraduate in Economics so I’m going for a graduate degree now. My wife, Kori, is a sign language interpreter. She is extremely talented and is also the outreach coordinator for FFT1. She’s my greatest supporter.
Does your wife Kori's work with the deaf and hard of hearing community have a diabetes connection?
Yes. I mentioned my wife is an ASL interpreter. One of the “forgotten” segments of the diabetic community is those who are diabetic and deaf. That’s tough. Once my wife met a lady who was deaf and during the conversation noticed the lady was fidgeting with something under her shirt. Well, Kori knows enough about it to figure she was messing with medical equipment. So Kori asked her, “insulin pump?” She said the lady looked confused at first then lit up when she realized Kori knew what diabetes was.
As Kori explained her role and connection, the woman wouldn’t stop talking. She was in her 60s, but had never met anyone who spoke her native language who knew anything about type 1 diabetes. Kori then mentioned that we have lots of deaf friends who are interpreters, family, or deaf individuals with a connection and we could introduce her. I met Tracy for the first time the following week at a JDRF walk. She ran right up to me and gave me a hug. We talked about Omnipods, Afrezza, and Dexcoms... none of which had she ever heard of. 'Cause, ya know, she’s deaf... so apparently she doesn’t deserve treatment options. Tracy cried when the walk was over because she was so happy to have met everyone. She comes to every single one of our events now and we try and get together for dinner every so often. That’s rewarding.
You mentioned Beyond Type 1. You just joined that organization's Family Council, didn't you?
Yes, another great honor we’ve had is becoming members of Beyond Type 1’s Family Council. They recently rolled out this out to go along with their Leadership, Science Advisory, and Global Ambassadors Councils and Kori and I are a part of it. We are happy to help impact such a wonderful organization and are excited about the opportunities that lie ahead.
What is your website, GlucosEnough, all about?
It's my still-being-launched blog. I’m a storyteller. I love to open the door to my mind and my heart. I want people to really know me. And when it comes to T1D, my story is... complicated, not to mention long.
I think I have an interesting point of view that people would want to read. It’s been a long, hard road for me, and I haven’t always come out as clean as I would like. So I have some cautionary wisdom and some helpful insight from someone who’s really turned his story around.
I’m in the final stages of the design work of the site but I’ve gotten some good guest bloggers and have some of my own stories ready to go and hopefully I can get this thing launched before the calendar flips to May. Fingers crossed. As to the name, I think I just was kind of thinking that diabetes is never “spot on.” It just seems like you count wins as “close enough”... and hence, GlucosEnough.
Anyone in the DOC that you look to for inspiration?
I’m inspired every day by (Beyond Type 1 co-founder) Sarah Lucas. I’ve never met someone with more drive, determination, compassion, empathy, brilliance, integrity, and all with such a great big heart. If there is one thing that I could possibly learn from her, it would be vision. Every time I describe why I truly admire Sarah, it’s because of her incredible vision. She seems to always play three moves ahead of everyone else and can see what others don’t... or won’t.
For example: Bike Beyond. Beyond Type 1’s incredible social media outreach. Their DKA campaign. I could go on and on. She just sees the big picture and has the courage to drive these initiatives home that are so important for our community on so many levels. It’s never JUST fundraising or awareness with her. It’s all of that -- and then changing perceptions and stereotypes, making real change outside the diabetes community, and having uncompromising integrity while still being able to put the pieces in place to make so much happen. So, um, yeah. She’s a hero of mine. Inside the diabetes community and out.
How about on the writing front?
From the writing standpoint two big influences of mine are Kerri Sparling, who is brilliantly lighthearted and witty (a tone that I love), and Elizabeth Maxon. Elizabeth is a wonderfully powerful storyteller. I first heard her speak at a JDRF Gala in a room full of people who were mainly there to be seen, or to hang out with (country singer) Eric Church for a minute. But when she stepped on stage and shared a spoken word piece that she had written about her daughter Lucy, the whole room went from bustly loud to so silent you could’ve heard a pin drop. She was captivating. Her book Type Onederland is a great read, and she pours her beautiful heart onto the pages very nicely.
Finally, getting back to FFT1 organization: remind us how you are "filing gaps"? And are you looking to expand beyond your home state?
If I ever got enough help to make it bigger than Charlotte, maybe -- I don’t really know. It’s mission has always been to be a gap filler, which means for instance is how quickly we can act. Last year, my contact at JDRF called me with a mother who had just contacted her asking for help. Her 13-year old-son had just been diagnosed and the father promptly left the family. They were low-income, and the teen went to a school where there were no other T1Ds. You can only imagine how he saw diabetes. This kid needed to be around some positivity fast! Problem was, it was March and all the JDRF and ADA camp spots were already full.
Well, I spent the next week calling all the camps in NC and touched base with the mom, and I finally pulled enough strings and cashed in enough favors to get this boy into Camp Adam Fisher. Then we held a charity craft beer tasting at one of the spots that knows us well and raised enough money to send him to camp for the next two years. All of this came together in about three weeks. JDRF just can’t do that. We act quickly. We don’t have a huge bureaucracy. We can identify, plan, and solve specific problems in a localized area very quickly.
Wow, thanks for sharing your story, AJ!