3 Things I Learned From the Virtual Friends for Life Orlando 2020 Conference

This past week, I attended my very first virtual diabetes conference: the 2020 Friends for Life Orlando conference, hosted by the Children with Diabetes (CWD) organization.

Before I recap my experience, I’ve got to give a heartfelt round of applause to every single individual involved in the process of turning this in-person event into a virtual one. Between figuring out the technology and adapting the program to make sense in an online format, I’m sure it wasn’t easy, but the CWD staff and many volunteers made it appear seamless. While every conference attendee (myself included) would have loved to see each other in real life in Orlando for this event, it was the right (safest) call to make this conference a digital one. And the majorly bright side of doing the conference online was that more people were able to attend *for free* – literally thousands of people! Each state in America was represented, as well as dozens of countries. The massive turnout makes me happy as I think about how much more accessible this particular conference was to people with diabetes and their families around the world.

Moving along to…the actual conference!

Attending the Virtual Friends for Life Orlando 2020 Conference
All decked out in my conference gear – t-shirt, name tag, green band, and OmniPod, to boot.

It ran from Wednesday, July 14th through Sunday, July 19th. Given that I was away with my family for the duration of the conference, I knew going into it that there was no way I would be able to attend every session or social event. (I was by the beach for a week, so when given the choice between staying indoors or logging onto my laptop…need I say more?). However, I also learned pretty quickly that many of the sessions were going to be recorded and made available at a later date (along with a report summarizing the conference, which will be ready on the CWD site in early August)…so there’s a good chance I’ll refer to some of those recordings for the sessions I missed.

But in terms of the handful of sessions that I did make it to, there were some major takeaways I got from them. Here’s what I learned:

#1: There are some important steps that I (and the rest of the diabetes online community) can take in order to address underrepresentation within our community. In the last few months, issues of underrepresentation of people of color within our diabetes online community has gained overdue attention. Individuals and organizations are working hard to address this and make everyone’s voices equally heard. However, I’m sure that I’m not the only person who felt helpless when trying to figure out how I, as just one person, can make a tangible difference. During one of the conference sessions that I attended, I learned that there are actual a few simple steps that I can take that will make a big impact over time: Follow social media accounts run by people of color. Amplify their voices by sharing and highlighting their content. Support and listen to their experiences as non-white individuals with (and without) diabetes. The bottom line is that everyone deserves to have their voice heard, no matter what, and our community must come together in order to help make this happen. It’s an uncomfortable truth that these representation issues exist, but it’s one worth acknowledging and doing everything within our power to fix it.

#2: Diabetes care and management comes in many different formats, and what works best for one person should always be respected. Of course, I’ve always known and believed in this, but this notion was reinforced for me during one of the sessions that I attended. I can’t remember the exact context, but it was brought up that sometimes people who choose to manage diabetes with multiple daily injections (MDI) take a little heat from people who use insulin pumps. In other words, those who prefer MDI might get pestered and questioned by this choice, which is unfair because it’s a very personal one. It reminded me of how I refused to even contemplate an insulin pump for nearly two decades of life with diabetes – I was so ardently against them for no real reason other than I just preferred my MDI regimen. But then when I did switch to a pump, I was instantly converted and I can’t really imagine going back to MDI. So when I saw a lot of MDI-ers reminding the rest of us that pumps aren’t for everyone, I remembered that diabetes care and management tools aren’t always high-tech (and that doesn’t make them any less effective) and that devices shouldn’t be pushed onto those who get by just fine the old-school way. At the end of the day, we’re all doing our best to take care of our diabetes in the way that’s right for us, and we should always remember that we’re in the fight together.

#3: Our community is strong, resilient, and adaptable – the virtual format didn’t put a damper on anyone’s enthusiasm. It was truly incredible to see how much energy every speaker, staff member, and attendee had for the event. You could practically feel it radiating through the computer screen in some of the sessions! Diabetes forces us to make decisions that are tough sometimes. It throws curve balls in our paths and we must find a way to deal with them, and we always do. This collective tenacity totally translated to this conference as we embraced the virtual format. It was heartwarming to see photos all across social media throughout the five days from attendees and speakers alike showing snippets of their at-home conference experiences, and I loved how everyone had so much spirit for the event. I admit that I even got up and danced  (to several songs) when we had our virtual banquet on Thursday night. I gladly draped the tablecloth and fairy lights I got in my BoFFL (Box of Friends for Life, a package I got in the mail last month containing swag from conference sponsors that was available to the first 500 conference registrants) to really set the mood as I ate dinner “with” diabetes community members across the country and ’round the world…and smiled widely because my T1D mom was able to experience it with me for the first time.

So yes, while it’s a bummer that I didn’t get to hug so many of my friends from the diabetes online community or meet new ones for the first time in-person, I’d say that the virtual conference exceeded my expectations in terms of what it delivered using the available technological resources and passion from the community. Hats off to the sponsors for doing what they could to really engage attendees, and another extra-special kudos to the staff, volunteers, and speakers who pulled off yet another amazing conference.

It just makes my anticipation for the next in-person one that much greater, knowing how wonderful it will be to see everyone in-person again.

Looking Back on my First Diabetes Conference

This post was originally published on July 18, 2013, on the ASweetLife website. Since I’m away on vacation this week, and it also happens to be the week of the 2020 CWD FFL conference, I thought it’d be fun to look back on the diabetes conferences I’ve attended in the last seven years. I got very nostalgic when reading this old post – all the feelings that I had during that week rushed back at me. To this day, I feel so lucky that I got to go and meet so many amazing people with diabetes – many of whom have literally become my friends for life. Read on for my full conference experience…

Children With Diabetes Friends for Life Conference 2013: A First-Timer’s Report

I was the kind of diabetic child who refused to attend any sort of diabetes camps or events. I always told myself, I don’t need any diabetic friends. I can do this by myself. And I wasn’t exactly alone with my diabetes. My mother has type 1 diabetes, too. We’ve always had a diabetic partnership, and for most of my life that has been enough of a support system for me.

However, as years have gone on I have become more comfortable with the diabetic part of my identity, so much so that I joined the College Diabetes Network (CDN) last year, an organization whose mission is to empower and improve the lives of students living with type 1 diabetes through peer support and access to information and resources. Through CDN I started meeting other diabetics my age, and was blown away by how refreshing it was to chat with them about the daily challenges of living with diabetes as a college student. And thanks to CDN, I learned about an opportunity to apply for a scholarship to attend the Children With Diabetes Friends for Life conference in Orlando, Florida. The CDN team, Christina Roth and Jo Treitman, encouraged me to go for it. This past April I applied, and by May, I had received the news that I was chosen as a scholarship recipient. I was overjoyed.

Looking Back on my First Diabetes Conference
I recreated my overjoyed reaction to receiving the scholarship almost immediately upon arriving to Disney. Here’s the photographic evidence.

Fast forward to July 10th, when I found myself sitting next to my father, the most wonderful traveling companion, on a plane. Our destination was the Coronado Springs Resort located in Disney World, where we would spend the next five days taking advantage of all the conference had to offer. I wasn’t sure what to expect. Would I meet other people my age? Would I enjoy myself? Would I benefit from the conference? I was anxious, to say the least.

My concerns were allayed once I registered and saw a lobby full of conference attendees. I did my best to absorb the sea of faces before me: all of those people had something gigantic in common with me. It dawned on me that I would get to know some of them well over the course of the next few days, and I couldn’t wait to start the process of making some friends for life.

Before I go on, you might be wondering what exactly happens at a Children With Diabetes Friends for Life conference. In short, families or adults with type 1 gather to spend time together. Participants are are divided into groups by age. I was sorted into the college-age group, which was for 18-22 year olds.

For the duration of the conference, attendees are encouraged to participate in workshops that address a large variety of diabetes topics, like the latest technology for diabetics, dating and diabetes, starting a family with diabetes, and creating diabetes blogs. I had the pleasure of meeting Jessica Apple and Michael Aviad at the diabetes bloggers session, as well as fellow bloggers Kerri Sparling and Scott Johnson. As a relatively new diabetes blogger, I found this workshop to be enlightening as I listened to the advice other bloggers had to offer. I’m excited to explore the intriguing realm of diabetes blogs and gain insight that I can apply to my own blog.

As far as the social aspect of the conference was concerned, I hit it off immediately with several people at the college dinner that was held on Wednesday night. Each person I spoke to had a different perspective on what it was like to be a young adult with diabetes. I was impressed by the clear resilience and independence of the students around me, and I was truly pleased to learn that diabetes wasn’t the only thing we all had in common. Thursday night proved to be fantastic, too. We attended the Friends for Life banquet and ball, which was a full-fledged party with food, music, and dancing. Then my newfound friends and I ventured to Downtown Disney and had a blast soaking up the magic of Disney World and exchanging stories – both diabetes related and unrelated.

One story that I heard at the conference particularly moved me. I was at Brandy Barnes’ workshop about Women and Diabetes – another excellent session – when a diabetic woman sitting next to me became emotional as she spoke about her young daughter with diabetes. She explained how she was dealing with guilt, as she felt responsible for her daughter’s diabetes. She feared the consequences this would have on her little girl later on in life. I felt a compelling need to reach out to this woman and let her know everything would be okay. I spoke to her briefly after the workshop, and explained to her that my mom and I are a diabetic duo, too. I told her that when her daughter grows up she’ll be grateful for her support, knowledge, and perspective as a fellow diabetic with a deeper understanding of diabetes. My mom and I can attest to how even though diabetes has tried to knock us down over the years, we’ve taken control of it and become stronger as a result. I gave the woman my e-mail and the address to my blog, and if she is reading this now, I want her to know that I meant what I said: everything will be okay.

Looking back now with the eyes of someone who attended the Children with Diabetes Friends for Life conference I can say that I regret – to a certain degree – not attending camps when I was younger. Being around others with diabetes has given me greater awareness of what it means to live with diabetes. Additionally, I am feeling more inspired than ever as a diabetic and a writer to put my story out there and do anything I can help and impact others, all while listening to and learning from what others affected by diabetes have to say about it, too.

A Week Off

Starting tomorrow, I’m on vacation for a week – not from my blog, of course, but from my real-world job.

I’m headed to the beach for the week. It just so happens it’s also the week of the first virtual CWD FFL conference, which I plan on jumping in and out of throughout vacation.

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I HOPE my week off involves all of the things in this photo – I’m looking at you, fancy coconut drink.

Like many other 2020 CWD FFL conference registrants, I have many mixed feelings about the conference turning virtual. I’m sad and disappointed that after a seven-year hiatus from conferences, I’m not able to make my IRL return to it this year. But I’m also exceptionally grateful that the CWD FFL staff made the call months ago to turn virtual because they recognized it would be safest for our at-risk population. I’ve been in awe over how quickly they made the transition from an enormous in-person event to an enormous-er virtual event – they’ve proven how effective they are at organizing this sort of thing, and I applaud everyone involved for their efforts.

My original plan was to attend the conference in-person this year while my family was at the beach for the week. But obviously, when the conference became virtual, I decided to tag along to the beach with my laptop in tow because I wanted the best of both worlds: family time and diabetes online community time.

Normally, I wouldn’t dream of packing a laptop along with my swimsuits and sunscreen, but even a trip to the beach looks a little different this year. I have no idea if my family and I will be able to even go to the same strip of sand and ocean without having to worry about things like too many people and not enough masks. We probably won’t be able to eat at many restaurants like we typically do on vacation; instead, we’ll likely cook a significantly higher percentage of our food at home. And we definitely won’t be able to peruse the shops like we have done every year since going to this particular beach town – we’ll have to be a little more creative when it comes to staying entertained.

It’s a weird adjustment to have to make, but I think we’re all in agreement that we’re just happy to have a safe place to get away to for a period of time. And I’m very glad to have the option to soak up the sun while also soaking up support, information, and friendship from the diabetes community.

 

27 Acts of Kindness: Days 12, 13, and 14

In times of sadness, fear, and uncertainty…laughter can be a powerful medicine.

I know that I haven’t had much to laugh about lately. Neither has…well, the world, really.

So my desire to have a good chuckle, and make others laugh along with me, was strong this week and inspired Friday’s little act of kindness…

Friday, 4/17 – Act of Kindness #12: I dressed up as Dwight Schrute today.

Yes, that character from The Office. Two years ago, I dressed up as him for Halloween and it was a hit among my coworkers. I figured I could surprise them on Friday by dressing up as him (I still have the wig, glasses, yellow button-down, and tie) and attending my virtual meetings in the beet farmers’ signature garb.

Despite my concerns that they might think I’m a freaking weirdo, they loved Dwight’s appearance in both of my Friday afternoon meetings. Inspired by their positive reaction, I took my Dwight disguise a step further and uploaded all sorts of pictures and videos to Instagram of me in costume doing funny things for my friends and family who follow my account to see. I got a ton of messages throughout the day thanking me for my silliness because it did what I wanted it to do: make people smile.

And I even walked my parents’ dog around my VERY small town dressed as Dwight. I got a couple of honks, a few smiles, and more confused looks than I could count, but it was all worth it – those who know and love The Office as much as I do got a kick out of it, and that’s what mattered to me.

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Photographic evidence of the Dwight costume. And a phrase commonly associated with his characters with a diabetes twist: Bears. ‘Betes. Battlestar Galactica.

Saturday, 4/18 – Act of Kindness #13: Early Saturday afternoon, I got the disappointing news that the Children with Diabetes Friends for Life Orlando conference was canceled this year. I was saddened because I made plans to be there in-person for the first time in seven years. There were so many people from the diabetes online community who I wanted to meet in real life at this conference, but I know that the right decision was made to help keep our community safe and healthy at home. Plus, the conference is moving to a virtual format, so it helps to know that we will be able to attend it in some form.

Anyways, the cancellation encouraged me to ask for a partial refund (in lieu of a full one)  for the conference registration I’d purchased earlier this year. The money that I didn’t get back went straight to Children with Diabetes to help them fund their mission, and I feel that it was the right thing to do since they need support (and funding) to make these conferences happen in the first place.

Sunday, 4/19 – Act of Kindness #14: New England weather is effing weird. It snowed and rained all day Sunday, and then yesterday it was sunny and a fairly warm 61 degrees! The beautiful weather brought with it a revitalization for me. I had all sorts of energy to help my parents with a myriad of tasks around the home, so that’s what I did. I couldn’t even complain about it, because dare I say, I enjoyed the chance to move around the house and yard so much (if my parents are reading this, they’re probably jumping for joy over the fact I just admitted that). It felt good to be productive, and since my parents have both worked their butts off in the last few weeks (okay, they always work hard, but the last few weeks have been a little different), I was happy to do a little something that helps them out so they could have a bit more time to rest.

My acts of kindness continue to be small, in the grand scheme of things. But knowing that they’ve helped people, in some teensy-weensy way when things have been rough, continues to motivate me to keep up this challenge. Halfway there!

Overcoming Fears and Feeling All the Feels at FFL Falls Church 2019

I wasn’t sure what I was doing here.

“Here” meaning the CWD Friends for Life conference that took place in Falls Church, Virginia, this past weekend. CWD/FFL are acronyms synonymous with some of the largest, best-known conferences for people with diabetes and their families. I went to my first in Orlando back in 2013, and it resulted in me craving more chances to spend time with large groups of T1Ds.

However, timing and money prevented me from going to as many conferences as I’d like in the last few years. I did go to one back in 2017, but it wasn’t what I’d hoped it would be…so going into FFL Falls Church 2019, I was simultaneously excited and nervous.

My fears and anxieties hit their peak within minutes of me arriving to the hotel that was hosting the conference.

All around me, I was witnessing mini reunions taking place. It seemed like everyone in attendance knew each other, and the introvert within me was totally freaking out – how could I possibly join these preformed friendships?

I left that first night feeling a little deflated. I’d only managed to speak to a couple of people who weren’t exhibiting vendors, and I’d spent entirely too much time looking busy on my cell phone when in reality I was just hoping someone might come up and talk to me. It was a little pathetic, but I knew I’d go back the next day having learned from my mistakes.

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Wearing the signature neon green bracelet (which denotes that I have T1D to other conference attendees – the other bracelet color is orange and that means you do not have T1D).

Day 2 rolled around and as I moved from session to session, I slowly started coming out my shell. I met and spoke with parents of T1D children of all ages. I heard a wide variety of diagnosis stories and experiences. I forced myself out of my comfort zone even more by attending a session that focused on diabetes and complications, which I normally can’t stand thinking about, but I actually found it to be one of the best sessions of the entire conference. It’s amazing how much people can open up to a room of what started out as strangers but quickly turned into friends and confidants.

By the third and final day of the conference, my diabetes soul was feeling rejuvenated. It’s pretty difficult to put into words, but being surrounded by so many people with T1D (and those who care for them) for a full weekend is unlike anything else. You’re around people who understand everything about diabetes. They know what a low blood sugar feels like. They know that 4 beeps emitting from an OmniPod is no big deal because it’s just a 4-hour expiration alert. They know how to carb count better than most doctors. They know what burnout is.

It’s just really magical.

In the end, I’m incredibly glad I went to the conference. I met people I might not have ever had the chance to meet. I learned quite a bit about some new diabetes technologies and medicines (more to come on those later). I had open and honest conversations about nearly every aspect of diabetes, which made me feel less alone. I left feeling happy, better informed, more connected, and most of all, proud of myself for overcoming my fears and attending the conference on my own.

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My happy face at the end of the conference.

 

A Bad Case of T1D FOMO

You might be staring at the latter half of this post’s title and asking yourself, “What kind of acronym is THAT?”

Let me help you out: The title is meant to indicate that I’m suffering from a bad case of type 1 diabetes-specific fear of missing out. (T1D FOMO…if it wasn’t a thing before, it is now.)

I decided that this was the best way to describe how I’m feeling about missing out on tons of excellent diabetes conferences, events, and meet-ups this summer. I think it’s striking me particularly hard this week because I know that the Friends for Life conference is about to kick off in Orlando. That one is special to me because it’s the first conference I ever attended, and it’s hard to believe that it was already five years ago.

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#SquadGoals from my first conference, which was already five years ago.

Why am I unable to go to most of these gatherings? And what’s so great about them, anyways? Well, to answer that first question, there’s several reasons why I have to skip many of them. The biggest reason is financial: The cost of conference attendance can be astronomical. Between airfare, hotel, registration, and various other conference fees, you’re easily looking at spending a minimum of $800 – and that’s if you can find cheap and direct flights to the destination. The other side of the coin is that I’d have to reserve my limited vacation time for these events, and potentially sacrifice time off that I could’ve spent with family and friends. I understand that logistically speaking, it makes the most sense to have the majority of these events in the summer months – kids are done with school, generally good weather makes it easier to travel, etc. But having to choose between a diabetes conference that’s bound to be a wonderful time and a highly-anticipated vacation with loved ones is a choice I’d rather not make.

So you think that those factors would make my decision easy, but it isn’t. I hate not going to these events because I know firsthand how magical they are. It’s really neat to meet up with so many people from the T1D community all at once, and it’s even more incredible when you get to shake hands or embrace someone you’ve connected with online, but hadn’t met IRL (in real life) yet. Whether the conference is just a weekend or several days long, it’s awesome to feel “normal” throughout the whole thing. You’re among people who don’t look at you funny when you test your blood sugar before a meal, and the chorus of beeps and buzzes from medical devices never get mistaken for cell phones going off. Sure, I can virtually attend a conference by scrolling through my social media feeds and reading updates from T1D attendees, but it just isn’t the same. While it makes me happy to see them having a fabulous time together, reunited at last, I can’t help but feel slight pangs of jealousy – this is where the FOMO comes into play – as I imagine everything I’m missing out on.

I know I’m not alone in this feeling – there are many others in the diabetes community who can’t go to conferences for several different reasons, even though they want to go. And I can take comfort in the fact that even though I couldn’t go to a bunch this time around, there will always be more in the future, and some will be more affordable than others.

My bad case of FOMO will go away before long, and in the meantime, I know that there are probably tons of other T1Ds who are attending their inaugural conferences this summer, and who will experience what I did five years ago for the very first time. And that thought puts a smile on my face.