WFSB Sports Story on the racetruck!

Great piece on Tony Lafo Racing, local Higganum race truck driver who is donating part of his race winnings this year to the nonprofit Logan is fundraising for, Children with Diabetes Friends for Life! Logan has a brief spot in the interview as well!
Logan met Nick Jonas last month and had him sign some of his new headphones/earbuds to use for fundraising. If you donate this month to Logan’s Children with Diabetes race fundraising, you will be entered to win a pair of Nick Jonas headphones in a signed box!

 

 

What is Type 1 Diabetes?

I have had to explain quite a bit lately what Type 1 Diabetes is and isn’t. Check out these two awesome one page posters created by Beyond Type 1. Know the warning signs, it can save a life!

 

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Belle of the Ball

Logan had a fantastic time as a youth ambassador at the JDRF ball on Saturday night! This is the 3rd year he participated. He loves selling the raffle tickets, delivering the flowers to the live auction winners and being on stage. The tux and tie are his favorite part, I may have a future CEO in the making! I love that they have this program for kids, where they can be involved in their own special way and help to make a difference!

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EBK visits the race truck!

EBK stopped by to see the truck last night and hang out with “the guys” for a bit. I really should find more motivating weeknight events as the kid plowed through his homework 🙂

As a final reminder you have until Friday at noon to donate $15 or more to win one of the below items:
2 tickets to see Hans Zimmer at Foxwoods on July 23rd OR
2 tickets to the New England Air Museum OR
4 passes to the Lutz Childrens Museum
Non CT peeps-you will be entered to win a $25 Starbucks GC.

Logan finally gets to elbow bump Nick Jonas!

Of course, I’m signed up to receive alerts from every famous person that has Type 1 Diabetes that supports our kids. As many of you know, Nick Jonas is one of the founders of Beyond Type 1, an awesome nonprofit that has a penpal program for Type 1’s, an app for parents with awesome resources, an ongoing DKA awareness campaign for pediatricians, they help kids get a Jerry the Bear and so much more! So when I saw he was coming to NYC last Saturday for a meet and greet to sign headphones I put it on the calendar and figured we would add to our headphone pile and Logan would be excited all week.

That’s an understatement. I have been asking Logan to clean the floor of his room for over a month. When I told him he could spend Saturday in NYC in line meeting Nick or cleaning his room, he magically found time to clean it a little bit every day before or after school. We can walk in there now!

We got there early as we were worried it would be a mob scene but we secured a great space in line at 10am (3 hours before kickoff). I went to grab Logan a pair of headphones and of course we came up with the brilliant idea to get additional to auction off as a fundraiser.  Wound up with a giant bag full of stuff, which Logan helped ring out of course. The time went by really fast, between Logan chatting with security and the sales ladies to me talking about the issues in the world with a couple of teachers sitting next to us. Before we knew it, the screaming started, the pictures along the now humongous line were taken and Nick arrived. Our time in line wasn’t long at all but when it was our turn Logan and I were so star struck that he forgot to ask him a few things. They did get to show each other their pumps and talk about Percy (who came with us on the trip). Logan brought him one of the Fueled by Insulin! race team tshirts as well! It was such an amazing opportunity for Logan, I hope he runs into him again someday.

Do you wish you had one of the autographed headphones/earbuds? Stay tuned to our page as we will be auctioning one off for each of our fundraising efforts over the next few months!

Speaking of running, I’m on the Beyond Type 1 team at the Abbot 5K in NYC in November. Beyond Type 1 is the nonprofit Nick founded (with 3 other awesome people) to help families with Type 1. Please donate to my fundraising effort today if you are able, this one is a challenge for me in advance of running with Logan in the January races. I refuse to have him beat me this time so this is my practice race for a good cause that is special to our family! https://donate.beyondtype1.org/ebkmomsteam

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Show me your pump!

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One of the signed items we acquired!

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Concierge at Bloomingdales said he will tweet out our auction posts once we have them ready!

Diabetes Mine Article-Logan Merwin: The T1 Boy Behind the ‘Fueled by Insulin’ Race Truck

Check out this Diabetes Mine article on how the elbowbumpkid was born, his obsession with hot wheels, the race truck and much more! Linky so you get all the pictures:

http://www.healthline.com/diabetesmine/logan-merwin-insulin-race-truck#1

Article in case you don’t feel like clicking on a link:

Logan Merwin: The T1 Boy Behind the ‘Fueled By Insulin’ Race Truck

Since he was just a toddler, 10-year-old Logan Merwin in Connecticut has had a love for cars that’s evolved from playing with Hot Wheels toy cars to big dreams of monster truck racing when he grows up. Given that he’s been living with type 1 since just 17 months old so it’s all he’s ever known, Logan is channeling his passion into making a difference through diabetes awareness and advocacy.

Quite literally, Logan is “Fueled By Insulin” and is the inspiration behind a very cool diabetes-themed racing truck dubbed “New England’s First Type 1 Awareness Racing Truck.” He’s made the New England news recently, with truck driver and team owner Tony Lafo Racing and their sponsor American Sign Motorsports taking Logan’s story to heart and creating the Fueled By Insulin campaign to support the beloved Children With Diabetes organization. Longtime racer Lafo is taking this cool diabetes-themed #82 Ford F-150 Pro-Truck to races all around the New England, most recently on April 29 and this coming weekend on May 7.

Very cool, and it happens to coincide with the month of May, when America revs up its engines to mark NASCAR racing season. Coincidentally, but unconnected to Logan’s story, the JDRF has a new initiative on that front: T1D, Motorcraft, and Me, that makes this an especially timely of story to share.

Today, we’re thrilled to share an interview with Logan’s devoted D-Mom Samantha, all about the awesome stuff they’ve got going on these days.

 

Talking Insulin and Trucks with D-Mom Samantha Merwin

DM) Hi Samantha, of course we’re going to ask you to start by sharing Logan’s diagnosis story…

SM) Logan was diagnosed July 11, 2008, and is now 10 years old, and next summer we’re planning great things for his 10-year dia-versary in 2018.

As a baby, he was always playful with us, energetic and ready to start his day. He had his 15-month pediatrician check and had been sick right afterwards for days. He recovered, but a couple of weeks later at 16 months we noticed that he was eating less and drinking more. He was filling diapers constantly and withdrawn. Over the course of a couple more weeks he stopped eating anything but small snacks. We still thought it was one of those kid’s phases but grew more anxious when we were at a birthday party and he wouldn’t play or connect with the kids; he just kept drinking and hanging around us. We called the pediatricians office 3 days later because when he started sleeping several hours later every morning, we knew something was wrong — as he was always like he is now, jumps up ready to start his day. We asked for an appointment later that week but thankfully they recognized the symptoms and called us back to come in that same night. They were literally waiting for us, whisked us in, pricked his finger and sent us to the children’s hospital. We caught it early as he wasn’t in DKA yet, his blood sugar was in the higher 500’s so we didn’t have to get admitted.

What a scary transition to have to make…

Yes, we went back and forth for a few days getting educated on what we would now have to do to keep him alive. Those first three months were a rough road until we put him on a pump. He hated the shots and it was mentally draining on all of us to do them.

Anyone else in the family with diabetes?

No one else in my family has it, but my husband’s brother was diagnosed with type 1 when he was in college, in his early 20’s.

Did that create a special bond between Logan and his uncle, and how is your brother-in-law doing these days with his T1D?

I wish they lived closer so we could have free, safe babysitting! We have no relatives within close geography here. When they see each other during our annual visits to Chicago, they definitely have their own conversations about type 1 and they definitely do test together.

Well, it seems you’re creating an extended online family with your blogging. Can you share the story behind the Elbow Bump Kid blog?

Logan was trying to think of a catchy fundraising name or slogan when he started fundraising for CWD in 2016, and he decided on elbowbumpchallenge, which turned into elbowbumpkid — since he bumped the most elbows EVER at the FFL events! Pretty funny, but he’s known for it in school as well. They usually shake hands when entering the classroom and Logan has been elbow bumping instead every year. Here’s our very first blog post, about the origin of the elbow bump.

We understand Logan’s also a runner, doing 5K and 10K events. How did he get started with that?

Logan wouldn’t play team sports until second grade and his favorite part of soccer, etc., was always the running. We had a running club at school that year and he loved it. That started his love for running. I wish we had more time in the day to have him practice more; we rarely have time for more than a mile after school.

Does diabetes get in the way when he’s running?

Well, since he was diagnosed as a baby, he has never known a life outside of T1D.

His diabetes does slow him down with running occasionally but mostly it’s the combo of the asthma. We really have to prep well for both diseases or it’s disastrous, as we have experienced! He did a great job in the Disney 5K running for JDRF in January, and he’s looking forward to practicing to run the 5K for JDRF and the 10K for Children With Diabetes in January 2018.

And how did he first develop such a love for cars and racing?

He’s always been into cars in some form; he used to sleep with a Hot Wheel in his hand when he was 2 — a little gold car. When we lost power during Hurricane Sandy for days, we piled Hot Wheels outside our house and let him race them down our walkway. He was into monster trucks and classic cars for a while as well. While the Hot Wheels phase died down for a bit, it came back in full force over the past year. For a school project last year, he pulled the town tax records on cars listed registered in town, then sat in center of town recording cars that drove by to see if it matched with town records.

He also decided last year that he was saving to buy a Lamborghini when he’s 18, so as he gets money he goes to the bank (with whatever he doesn’t spend) and deposits it. He’s pretty dedicated to that. We ran into a dealer when we were in London and he was able to get a pic or two up close!

That’s too funny! Any plans to go into racing when he gets older?

Since he was around 4, Logan decided he was going to be a monster truck driver on the weekends when he grows up. His main job will be running the hotel he plans on building and working at his bank. Or as a coin inspector for one of the federal mints. He can’t decide… then again, he’s 10. But it’s always something involved with cars on the weekends. Who knows with this kid, anything is possible!

Anyone particular in the racing or running communities who’s been an inspiration to Logan?

When Logan was little, my friend Jen sent him a video of NASCAR driver Ryan Reed, who we had never heard of prior to that. He has looked up to him since as a role model. He also met IndyCar driver Charlie Kimball at Friends For Life in 2016 so he has multiple role models that he follows related to racing cars. On running, he recently met Diathlete Gavin Griffiths while we were on spring break in London and has enjoyed following him on social media and reading his stories.

We are really lucky as he has had opportunities through FFL and otherwise to meet amazing role models in sports and life. He really feels like he can do anything and won’t be limited when he grows up thanks to these experiences.

Let’s talk about race-truck driver Tony Lafo and the fundraising support…

Tony Lafo RacingI’m sure you listened to Stacey Simms’ Diabetes Connections podcast, and what I said there is true about how we met Tony Lafo, driver and owner of Fueled By Insulin – it really was that simple!

He was a mystery donor to Logan’s random JDRF campaign pushes over the years, as I always post them in our town Facebook group once a year when I want to make a goal. We didn’t have an email or address for him until this year when for some reason the website had his email listed, so I could send a personal thank you. A few weeks later, I had posted a fundraiser Logan was doing at a local supermarket and Tony reached out to us to discuss the race truck partnership.

We brought it to Jeff (Hitchcock) and Laura (Billetdeaux) of CWD, and here we are, days from the first race on April 29. He’s SUCH a nice guy and his whole crew has been so nice to Logan. He’s been stopping down most Tuesdays and either playing Hot Wheels with at least one of them or sweeping their floors while they work on the truck. He doesn’t know any other type 1’s other than Logan, and he would prefer to help somebody local than send off a check somewhere. When he’s not racing he’s a full-time Fire Service Volunteer.

How cool! What’s the fundraising commitment?

Tony Lafo Racing, LLC, will help raise awareness by featuring the CWD logo on the #82 Ford F-150 Pro-Truck, as well as the Hauler and T-shirts and will donate 10% of race winnings to Logan’s fundraising efforts during 2017 — with a minimum pledge of $1,000.

What kind of challenges are you facing as Logan trains?

Logan isn’t out of school until mid-June so his running right now is a running club on Thursdays and whatever we can do on weekends. We plan to do a practice 5K each month starting in May to gear up for January, slow and steady at first. My biggest challenge is figuring out the minimum I have to carry with me, his supplies weighed me down a lot. When we practice locally, I usually just toss the bag down somewhere but having it on me the whole time was a lot of weight (EpiPens, inhaler, smarties, juice, Dexcom, meter,  and so on). We have been concentrating on the fundraising part right now, planning events to fundraise to meet his goals.

What else does this amazing kid have planned?

He will definitely take his advocacy to the next level, sooner rather than later. Right now he’s focused on fundraising and raising awareness for type 1 where he can. I suspect in future years, he will be involved with advocating to ensure everyone has access to basic supplies. We have had a lot of conversations, once he realized that not everyone can afford insulin or a Dexcom. It’s an ongoing conversation and if I felt there was a good opportunity for him to get involved in a couple of years, I’d present it to him and let him decide. We always make him feel comfortable that no matter what happens, he will have access to his Dexcom and insulin, but he’s aware of the challenges and concerned for others. He’s a very active kid and can’t imagine not having his Dexcom to help manage his care.

Your family seems very supportive of so many different D-Community orgs. Can you tell us about those connections?

We have been touched by so many nonprofits over the almost 9 years with type 1. We have a love for JDRF and do the run every year; Logan loves the pen pal program from Beyond Type 1, and I love their ongoing constant articles and communication. I really feel like they have connected the larger diabetes community.

Regarding the CWD Friends for Life conference, I knew about the event for years but didn’t sign up until 2015 as we were starting to experience our 7-year itch. I was looking for something different to help rejuvenate us and not free-fall into burnout. CWD does a great job with these events, bringing children and families together in a safe environment where they bond and have fun while learning. As parents there are a ton of sessions for us on everything you can imagine from learning about new technology to support groups. So we both loved it our first year. Logan even had a bunch of people sing happy dia-versary to him on his 7-year date. When returning to the event in 2016, Logan was inspired to write a speech to ask other kids to help CWD and bring awareness to the need for fundraising for the event. He loves being around “his people,” especially the teenagers and young adults with T1D. He’s inspired by them and can’t wait to help at a CWD event when he’s older like them!

And you’re involved with the #WeAreNotWaiting movement too, right?

Yes, there are so many other nonprofits we adore and I hate leaving anyone out, like Nightscout Foundation, where we have access for the nurse at school to view Logan’s blood sugars when he’s there to help keep him safe. While we have to narrow our financial/fundraising focus to make an impact, we will support the organizations that help Logan and other T1 kids wherever we can, whenever we can. Logan always says that while JDRF funds for a cure, so many other nonprofits like CWD help kids in their lives every day until there’s a cure. So we focus on both aspects — fundraising for a cure and helping kids live full and healthy lives with the disease.

 

Thanks so much for sharing your family’s story, Samantha! Can’t wait to see what the future has in store for Logan, and we’ll definitely be on lookout for that cool race truck!

7/11/2018

Logan and I have been discussing formalizing his fundraising goals for this year and next. As everyone knows, we are planning a number of events to fund raise for several nonprofits and wanted to communicate his actual goals so everyone knows we have a plan in place and won’t be fundraising forever!
Logan’s 10 year diaversary is 7/11/2018. For those not in the diabetes world, that’s his anniversary with diabetes, the day on which we celebrate his life every year. We could focus on 10 years of daily testing, pump site changes, hospital/doc visits and issues with accessing care or receiving our supplies. Instead we are choosing to focus on celebrating how Logan has advocated for himself over the years at school and with friends, how he has grown to want to help others, how we have found so many organizations that help Logan thrive in his day to day diabetes life and most important, how we have made so many friends and mentors along the way! Nothing stops Logan from doing whatever he wants to do, he may just have to spend more time preparing for it because of his Type 1. He has an incredibly positive attitude about his day to day management and we are proud to be his parents!
By his 10 year diaversary Logan wants to have raised enough $ to:
1. Children with Diabetes-sponsor an afternoon break on family day July 2018, which is within days of his 10 year diaversary!! Typically that time frame has no sponsorship and he has a specific vision on the event he wants for the kids! Since the kids only see each other once a year, he wants to throw a gigantic birthday party where all the kids can play games, eat Mickey bars and leave with a special gift. More details will follow as we get close to the goal for who want to celebrate and join us for the first time!  https://www.classy.org/fundraiser/890033
2. Beyond Type 1-donate Jerry Bears to kids that can’t afford them (25 bears=$1,000)
Originally Logan wanted to donate 100 bears but I told him we need to make realistic goals. Logan was actually in the trial in Providence where he got to play with the old Jerry the Bear and give them ideas on how to make it fabulous. I was absolutely thrilled when I saw the new affordable Jerry supported by Beyond Type 1 but even at the lower cost, some families will not be able to afford it due to medical supply costs. We hope that Logan’s fall 2017 campaign, Teddy Bears for Type 1’s, will help bring bears to more kids around the world! https://donate.beyondtype1.org/ebkmomsteam
3. Riding on Insulin-send a kid or 2 to ski camp (1 kid funded! each kid is $500)
Logan attended ROI for the first time in 2017 and loved it. He would love to help subsidize other kids whose families can’t afford the experience. Due to the other fundraisers, this goal will be met solely from fun fundraising events we are planning!
4. JDRFGOAL MET!!!!
beat whatever Barry Falcon fund raises for the January 2018 JDRF run.
Barry and Logan bonded a bit during the run rally this year. Barry is an incredible guy and has participated in a ridiculous number of JDRF rides and runs. This goal is a moving target but last year Barry raised close to $2K so he’s confident he will meet that goal. I love that Logan was able to easily pick an attainable goal for JDRF. As everyone knows, JDRF fundraises for a cure and helps fund technology and other advances that improve our diabetes management tools. I was worried about this one since no matter how much he fund raises, we can’t tell people there will be a tangible goal met but how much fun is it to try to beat one of the adults? http://www2.jdrf.org/goto/loganmerwin
This was a lot but I hope taking the time to document our goals helps you to share our event posts and help us fund raise to help our Type 1 kids!
Links: 

Podcast-Origin of Sponsorship with Tony Lafo Racing LLC

Ever wonder how we met Tony Lafo Racing? Logan and I recorded a podcast with Diabetes Connections. Start listening around minute 39.  Cue the imitation of the race announcer….

As a reminder, you can donate to either of his races here:
10K CWD: https://www.classy.org/fundraiser/890033
5K JDRF: http://www2.jdrf.org/goto/loganmerwin

Podcast here:

http://www.diabetes-connections.com/2017/04/18/frozen-insulin-unfinished-business-roddy-riddles-epic-arctic-race/

Back to the dark ages on spring break

We spent 9 days in London for our annual spring break trip. We had a fabulous time exploring the city and making memories. I loved Paddington Bear as a kid and was so happy I got to share my excitement with Logan at Paddington station and get him interested in reading the Paddington book series. Doug and I read the Harry Potter series previously but Logan was never interested–until he had the opportunity to visit Kings Cross and jump on Platform 9 3/4! Let’s not even discuss Hamley’s, the BIGGEST toy store I’ve ever seen with the craziest people who literally throw frisbees at your head. Another highlight was taking Logan to his first play, he loved seeing the kids perform in School of Rock. He thought of becoming a singer/actor for a day so he could perform and get a paycheck but decided against it for now…although he definitely had some good improv skills when he was caught taking a selfie next to someone’s Ferrari while they were getting coffee in South Kensington. Luckily they were super nice, like almost everyone we met in London (with the exception of airport security).

We didn’t overschedule or visit a kajillion museums. We did visit the money museum, science museum and Victoria & Albert. We had a list of places we thought of visiting and asked our concierge daily to contribute thoughts to our plan of the day. We were challenged with food due to allergies and being picky so that contributed to our plans. One day Logan was nervous about the thought of trying a new place and literally flagged a taxi on his own (as we were walking down the street ) to take us to a restaurant where we had an awesome experience a few days prior. It was hysterically funny but very reflective of our food experience in London.

Highlight-the crown jewels had a crazy line but it was worth it. The boys had to keep reminding me that it wasn’t a gift shop! Also, our hotel was amazing. The London Marriott County Hall is in an excellent location convenient to everything. The rooms were large, the coffee was yum and the staff was consistently friendly throughout our 9 day trip. We also loved the little side streets that turned into shopping neighborhoods. London had recently opened their first Lego store which had a mosaic maker that creates a personalized Lego of your face. Logan made one with his pump right next to him, it came out so awesome!

Lowlight-We had a visit back to the old days. Our Dexcom share, the system that shows us Logan’s blood sugar, wouldn’t send us data the entire trip. We did every troubleshooting item possible without calling them but in the end we wound up just asking him several times a day what his numbers were. Logan was awesome about it and amazingly his blood sugars were pretty good through the trip but we missed a couple of lows and spikes due to the lack of access to the data. It really gave us an appreciation for the technology we have access to day to day. It also made us feel sad that not everyone has access to it through their insurance. It gives us freedom to give him freedom and not worry as much when he’s active/sick/etc.

Overall, we had a fantastic trip exploring the city and we look forward to our summer adventures!