Why We Walk: 2020 Update

By anyone’s standard, this has been quite a year. And while the world continues to focus on a pandemic not to be named, life goes on… for all of you, and all of us. We have had to stop doing a lot of things, but Type 1 Diabetes, unfortunately, takes no breaks.

But through it all we have made the best of it and continue to be positively impacted by the effort of the JDRF and all of you. Let’s start with Covid. Having an immune compromised family member has been a complicated thing this year. Are we in more danger? Are we not? I can’t honestly say we know for sure. But what little we do know is that while Diabetes often appears on the list of “comorbities” that puts a person at greater risk, it is also commonly believed that if you maintain a healthy weight and have controlled blood sugar that a T1D should be in no greater danger than any one else of a severe Covid case. Why am I telling you that? Because we are very fortunate to provide Trey with the most up to date technology that does an AMAZING job of regulating his blood sugar. Better blood sugar = safer from Covid. That’s big! And that technology came directly from research funded by the JDRF.

And this year Trey was fortunate enough to be part of the pediatric study for this technology. The Tandem X2 Control IQ was an amazing experience. You can read more about our experience with it here!

Outside the UVA Center for Diabetes Technology, Trey holding his new Tandem X2 Pump with Control IQ.

Having amazing blood sugar control, that is considerably easier to manage has also allowed us to breath a bit easier as Trey persues the things in life that he loves. He loves the water. He loves kayaking and stand up paddlebaording.

This summer, while we did not see any of his friends, he was able to be a Counselor in Training at Passages Adventure Camp. Sending your kids to work all day on the James River, traversing rapids, going on long river trips and being in the sun can be a bit of a leap of faith. To that, each year we add thousands of dollars of medical equipment, an iPhone (neither of which are waterproof), several infusion sets that have to be taped, tacked and wrapped in place and a variety of low-sugar rescue snacks, glucose and rapid acting glucagon. Our goal is to be prepared for anything. We are so thankful for the technology that enables him to live his best adventure.

Side note – that wrap on his arm – that’s to keep the Dexcom attached to him.

We are also thankful this year, that with the help of the JDRF Advocacy program and thousands of supporters who took the time to write our elected officials, here in Virginia, House Bill 66 passed. This bill effectively limits the monthly copay for insulin to $50. This is huge. The current “retail” value of insulin is over $300 per bottle. Trey uses 2-3 PER MONTH.. Even with insurance (because historically, all insurances covered it differently, we have had a 3 month supplies of insulin cost over $1,000). Our family is thankful we have always been able to pay for insulin, but for many in our community rationing insulin has become a life or death situation. These are truly life changing effort on the part of the JDRF.

And if your wondering about Trey, he continues to exist above his Type 1. Last year he saw his first big concert (Twenty One Pilots), he acted in his first play (Annie Jr), he got his first job (Passages) and got into governor school (BRVGS). He “graduated” 8th grade and this fall he started High School with virtual learning. We are so proud of how hard he works and the young man he is becoming.

Our family is so thankful that all of you have chosen to support Trey and his goal of a cure. And in doing so, support the JDRF! Despite advancements in technology, Type 1 is still a horrible disease. And while our family is fortunate to be able to provide the best technology, many families still live with the rigor of multiple daily injections and finger pricks. The technology is amazing, but what we really need is a cure. We are passionate about the JDRF’s purpose and believe in their cause. Because it is our purpose. And we appreciate all of you for you support.

Clinical Trial Update: Control IQ rocks!

In October 2020, Trey was accepted into the Control IQ study at UVA. We could not have been more excited. For the first several months he was in the control group (meaning life remained the same and while in the study, he did not actually get to use the experimental technology). But in December, after doing his part, he was then given the “trial” tech to use for several months. And it was amazing! While he was in the trial, the adult version of this was approved by the FDA. So at 14, leaving the trial, he was eligible to move directly onto the new pump. Several months later, after data from the pediatric trial Trey was in was submitted to the FDA, this was also approved for the pediatric market. It has been a lifesaver for so many. When this technology was conceptually developed several years ago, it was due, in part, to support from the JDRF, who helped fund the research. We are so thankful…. our experience is below.

Trey’s Trial Update!

Lots of you asked so I am going to share the good news. Short version – its going great. Long version, well if you like to learn things, read on. Going to share a little base information so it all makes sense.

Trey’s pump (In fact all insulin pumps) have dozens of settings throughout the day that are meant to mimic the daily rhythm of his body (like your pancreas would), as well as help him correct for food he eats. We use these reports (see the image) to make changes to those numbers fairly regularly. Sometimes they work great for weeks or months, sometimes you have to make changes every few days. The goal, stay within range (between 70-180). Assuming you have a healthy pancreas, your body will keep you between 80-110.

Trust me when I say, that is way harder than it sounds for a Type 1. Until now, it required dozens of daily decision – we account for everything Trey eats, exercise, sickness, weather, stress and with a little good luck and proper timing we get close. When we get it wrong, we correct. More sugar if he is low. More insulin if he is high. And those corrections happen 24 hours a day. Yes, I have woken up in the middle of the night to keep my kid alive more than you want to believe and so have my fellow T1D parents, grandparents and family.

Several months ago, Trey’s pump (the Tandem X2) added technology to communicate with his continuous glucose monitor (they are two separate devices) and then to cut off his insulin if he went low. That’s a big deal – continuing to get insulin when your sugar goes low can very dangerous (think woozy > passing out > dying). With that, he started going low much less.Still following? I hope so, because this is where it gets good!

The trial he is in takes that same pump and technology and adds the ability to to administer insulin when he is high. (Insulin makes sugar do down, sugar makes it go up) The FDA has been hesitant to approve this. The Tandem Control IQ technology is currently waiting for the FDA to approve it in ADULTS. Trey is in the pediatric trial and it is following steps behind so we can get this to all the T1D kids (we have waited a long time).So whats been our experience? This picture are the reports from the week before we started and the week since.

—- First, in the big green numbers – Trey’s average blood sugar has dropped from 172 (an A1C of 7.6) to 141 (an A1C of 6.6). That is an amazing improvement.

—- Next notice that line that says CGM readings. Ok, we have had that for years. But just notice – this is only possible because his continuous glucose monitor (CGM) reads his sugar 290 times a day.

—-In the bar chart right below, that middle green bar is time in range. Trey has been in range 81% of the time, as compared to 63% before.

—— Then there is that pretty chart with all the vertical bars. That is his average sugar throughout the week, by hour. Before the technology, we struggled with over night highs. With the Control IQ corrections he is not going high at night and more importantly he is waking up in range.-

— Last, most notable to me, is that we are doing this with way less effort. I was climbing into his loft every night when I went to bed to correct his sugar and sometimes over night. And when we mess up it is much quicker to correct our mistake.

So yes, its amazing. But here is what I hope you remember. Its not a cure. Trey still has two different injection points on his body that we change every 3 and 10 days. He still has to tell his pump every time he eats and how many carbs we think are in it. He still risks going low, carrying emergency sugar and glucagon everywhere he goes. And he still has to take insulin all day., every day to survive. All day. Every day. (And we wont even start on insulin affordability).If you have read this far. Thank you! I hope it made sense and you learned something. We are certainly excited about what this will mean, not only for us, but so many T1D families.

The Great Reveal

Many years ago when our sweet 7 year old chose a team name, we became Trey’s Avengers. Because what seven year old doesn’t love a good superhero! Since then, it feels like we have been them all. We can’t help but feel very thankful that Marvel continues to pop out their movies and add to their universe, so that we can add to ours. Seriously Marvel, thank you!

So here we are in our 7th year and we have had some super fun themes for our team:

  • 2013 – Hulk – Smashing Diabetes (green)
  • 2014 – Captain America – Slashing Diabetes (bright blue)
  • 2015 – Iron Man – Attacking Type 1 Diabetes (maroon)
  • 2016 – Thor – Hammering Type 1 Diabetes (gray)
  • 2017 – Wolverine – Slashing Type 1 Diabetes (dark blue)
  • 2018 – Spiderman – Fight Type 1 Diabetes (red)

Where does that leave us? Ok, lets be honest, we are running low on the good ones. But we still have a few more up our sleeves and this one is pretty fun. So announcing for 2019:

Rocket Racoon – Rocketing to a Cure!

Look at that, even that model looks happy about it! We can’t wait to rock these with Trey on Walk Day. If you are there, come find us – your generosity has already earned us a tent on Donor Row and we are already planning a fun Guardians of the Galaxy themed photo booth.

Thank you for all your support and all you do for Trey’s Avengers and the JDRF. Walk Day is just one month from today – so yes, there is still time! Looking to donate? You can click the DONATE NOW button on the top menu bar and it will take you there!

2019: Why We Walk?

Well my goodness, Trey’s Avengers, have we really been doing this for SEVEN years?   It does not feel like seven years ago that I stood at Kid Med and had a doctor tell me that my sweet 6 year old child had Type 1 Diabetes (a disease I knew nothing about), and that he would have it forever.    Seven years since we rode in that ambulance for our first visit to the PICU.  Seven years since we learned what a pancreas did and how to stick our kid with needles.  Seven years of counting carbs, monitoring his sugar and inserting medical devices.  Seven years of acting as his 24/7 pancreas and keeping him alive. And of course, that makes this our 7th JDRF One Walk!!

Seven years ago they said the cure was right around the corner.  And while we have yet to turn that corner, or even see it in the distant future, we still believe it’s coming.  During that time, we have been fortunate enough to see some very exciting technological advancements.  Trey is still connected to his Dexcom CGM (continuous glucose monitor).  That CGM now also connects to his pump (that administers insulin to him 24/7) and can tell it to stop giving him insulin when his blood sugar is dropping.  This has been amazing.  He experiences so many less life threatening lows and we all get a bit more sleep at night. 

In all things, we try to focus on the positive and not the negative.  So we are not sharing pictures of his struggles.  The night he fell below 40 (around 30 he would start having seizures and around 20 could be fatal) for almost 2 hours.  The morning he woke up throwing up because of an infected infusion set that stopped delivering insulin overnight.  The 150+ times have had to insert an infusion set on his arm, thigh or belly (or the mess of scars they leave behind).  Or the morning he burst into tears in front of his class because the standardized test proctor was unprepared to meet his equipment accommodations (don’t get me started!)   The struggle is still all there.

But there has been so much good.  Trey has had another great year!   His first time at horseback riding camp (“Mom, can we get a horse?”), his first time snowboarding, his first Broadway show and his first kayak trip down over Hollywood (Richmond’s own Class IV rapid).  He just started 8th grade and we are so proud him, how hard he works and how much responsibility he has taken for himself and his T1D!.  He is kind and funny and loves adventure.  And each year, on Walk day he is always so filled with joy and overwhelmed with gratitude that so many of you take the time to support him.  It is truly one of his favorite days of the year!

This year he also did his first clinical trial!!  He is also currently enrolled in the final pediatric artificial pancreas trial for Tandem’s (his pump) new Control IQ Technology at the University of Virginia!  He is one of 150 kids across the country helping with this final stage of this trial before the FDA approves it for pediatric use.   What will it do?  It will help control his blood sugar all the time.  More insulin when he is high and less insulin when he is low.  It should provide him much more freedom and less work to keep his sugars in line.  Freedom?  Well its relative, he will still have two medical devices hooked up to him at all times with two separate infusion sets in, at all times, which we still have to change ever 3-10 days.  The original trial for this technology were JDRF funded and we are excited to be a part of it.  These technologies are not cheap. So we are excited that through JDRF’s Advocacy, more insurance companies are covering it.

While we have seen many advancements in technology, we have also seen our health care system shift and change in ways that have made the burden of caring for Type 1 nearly unbearable for many families.  There is so much discussion now about the cost of insulin.    There is so much misinformation.  This is leading to Type 1 families resorting to insulin rationing, crossing the border to buy insulin and using older, less effective OTC insulin.  This is dangerous and, in some cases, fatal.  It is a tragic moment each time we lose someone in the T1D community simply because the medicine they need to survive has become so unaffordable for many.   It happens more often than most people realize.  Wondering what that looks like?  Our last five vials (with insurance and the manufacturers discount) was $767.71.  That lasts less than two months. And without it, he would die.  We are fortunate that we can afford this, however many cannot. That is why we are thankful that JDRF continues to advocate for Insulin Affordability, helping to make insulin accessible to everyone that needs it. 

The great work JDRF is doing is made possible be money raised at One Walks and by generous donors like all of you. In these seven years, Trey’s Avengers has raised over $74,000.  A number that never ceases to amaze me.  And it is because of all of you!  Each person who has helped along the way – our friends, family, co-workers, neighbors, a handful of complete strangers and a bunch of amazing businesses.  We appreciate every bit of support we have received from you all.    Every penny makes a difference as we seek to improve the lives of our T1D community and seek a cure for this disease.  This year we are once again hoping to continue this journey and raise another $10,000 for JDRF before September 26th.  We appreciate all your gifts, in any amount.  To make your tax-deductible gift to the JDRF, through Trey’s Avengers please visit our JDRF OneWalk page today!

T1D Decal Fundraiser

Share our mission with the world and help raise money for the JDRF.

This year, Trey’s Avengers is excited to bring back our T1D Awareness Decal fundraiser.

These decals were custom designed for Trey’s Avengers.  They are created three color (red, white and blue) with high quality, outdoor vinyl.    These are vinyl decals, not stickers (the black is not part of the design).  We are so excited to work with vinyl creator Precious Gems, located locally in Chesterfield, VA.

Decals are only $14.  They can be mailed directly to you or picked up at the RVA One Walk.

To order:

  1.  Email:  danielle2721@gmail.com
  2.  Include your name and mailing address.
  3.  Payments can be made through Facebook, Venmo or paypal (danielle2721@gmail.com)

Proceeds benefit the JDRF through Trey’s Avengers.

 

Thank you for your support of Trey’s Avengers and the JDRF.  Together we are creating a world without Type 1!

CURE TYPE 1 Decal C

 

Why We Walk? 2017 Update.

This fall we will mark five years since Trey and our family started this journey with Type 1 Diabetes.  It has been a path of heartache and healing, new learning and new friends, small victories and big changes.  And needles, lots and lots of needles!  And while there continues to be progress towards a cure for T1D and developing technologies that help Trey manage his disease, we are not there yet.  This is why we continue to support the JDRF in their mission.

If you have been following our journey, you know that Type 1 Diabetes is an auto-immune disease.  It is not caused by diet or lifestyle choices.  It hits without warning and has no cure.  There was nothing we could do to prevent this disease.  He will never grow out of it.  It is chronic and life threatening.

Thanks to JDRF funded research and resulting technology advances, there is hope! Trey now wears two medical devices connected to his body through infusion sets at all times. His pump administers insulin to him 24 hours a day and helps give additional insulin for meals and snacks.  Insulin is life sustaining, without it he would die.  His Continuous Glucose Monitor (CGM) measures his blood glucose constantly, allowing us to monitor them remotely from an iPhone.  This year Trey upgraded to a new pump, which will soon be connected to his CGM.  And hopefully, in the next year, be able to react to his high and low blood sugars by turning his insulin on and off.  If none of that makes sense, just know, it makes Trey’s Type 1 diabetes easier to manage and makes him safer.

At age 11, 2017 has been a great year for Trey.  We narrowly missed an ER visit because of the stomach virus and had a blood sugar drop to 25 (dangerously close to a seizure) on a school field trip.  We have inserted over 120 infusion sets and done over 1,000 finger pricks.   Never a dull moment here, but he is still going great.  As I write this, he is at a kayaking and rock climbing camp on the James River, and I am happily able to monitor his blood sugar at home (technology is amazing!!).   This year he will start at Goochland Middle School (eeek 6th grade!) and continues to love Science, Math and reading.   He has also gotten into Mountain Biking and playing piano.   Trey has not let Type 1 slow down his sense of adventure or his ability to achieve.

Our family believes strongly in the JDRF mission and continues to be very involved with the Central Virginia JDRF chapter.  Trey was once again chosen to be a Youth Ambassador at the JDRF Gala, for the 4th year – getting on stage in front of hundreds of attendees and generous donors.  Our family also volunteers at the gala, serves as the Mentor Chair for newly diagnosed families and occasionally speaks at JDRF events.

We thank you for your continued love and support!

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2nd Annual Cornhole Tournament Announced

Trey’s Avengers is excited to announce our 2nd Annual Cornhole Tournament supporting the JDRF One Walk.  In 2016, we hosted our inaugural event with 31 teams, raising over $2,500 with the help of our gracious hosts Hurley’s Tavern.  It was an absolutely amazing event and we can’t wait to do it again!

Based on that success, this year we will be hosting a very similar event – same great location, new {cooler} September date.  We hope that everyone will join us again this year for our 2nd Annual tournament in the Innsbrook Pavilion.

Details are below and can also be found on our Facebook page and Registration page.

Want to support the JDRF and Trey’s Avengers but can’t join us at the Tournament??.  You can go directly to our team’s JDRF OneWalk donation page and make a secure, tax-deductible donation today.

Tournament Details:

  • 32 team double-elimination cornhole tournament with all entry fees going to Juvenile Diabetes Research! Not your ordinary tournament with several “cheats” available for the players!
  • 2 players per team / $50 per team entry fee – 100% of fee goes directly to JDRF. Each player receives a drink ticket good for a beer, rail drink or soda!
  • Registration at Noon / Games begin at 1 PM

Graciously sponsored by Hurley’s Tavern who will provide Happy Hour drink specials from 12-8 PM!

Prizes awarded to 1st and 2nd place teams.

Spectators also welcome! A special kid’s cornhole area will be set up for the young ones who want in on the action.

Thank You 2016 Donors & Corporate Sponsors

Trey’s Avengers has raised over

$50,000 in just four years!

This year we hope you will celebrate a huge achievement – Trey’s Avengers flew over $50,000 in total donations to JDRF since we started walking just four years ago.  And it is to each and every one of you to whom we owe our gratitude.  You all have done amazing things and we could not be more thankful.

So to every person that made this possible thank you – for your donations directly to our walk team and participating in our events, for sharing our events on social media and joining us at the walk, for every penny you send and all your kind words.  THANK YOU!  You are our team!

In addition, each year we have an absolutely amazing group of local businesses and corporate sponsors that support Trey’s Avengers.  It is through their generous gifts that we are able to hold fun events, give our awesome prizes ad raise even more money for JDRF.

The list is long!  And we are so greatful.  These folks continue to invest in our communities and we hope you will contiinue to support them with your business.

To our amazing tee shirt sponsors, who helped us raise over $2,000 – THANK YOU!!

Sierra Pacific Mortgage – CJ Grinnell – 804-301-3422

Custom Kitchens – Richmond, VA –  804-288-7247

ClockTower Realty Group – Rhonda Howlett – 804-815-0642

Aarrow Transmission – Richmond, VA

Long & Foster Realty – Ron Paquette 804-814-1398

Angus Dentistry – Midlothian, VA – 804-794-6893

Dunkin’ Donuts – Richmond Area Locations

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A huge thank you to our 1st Annual Cornhole Tournament hosts and donors.

The event was a huge success and we raised over $2,500.

Hurleys was our event sponsor and they were awesome.  In addition to taking care of our platers and guests during the tournament, they donated drinks to all our players and had food and drink specials all afternoons.

And to all our friends at the Shoppes at Innsbrook that donated prizes – thank you!

Capital Ale House

Beach Car & Grill

Boychik’s

Firehouse Subs

Joey’s Hot Dogs

And last, our sincere appreciation to Little Love’s Photography for donating their time and talent.

Thanks to everyone who participated in Little Loves Photograph’s JDRF Mini Sessions, we raised an additional $1,000 for JDRF.

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2016 One Walk

Every year we have been so fortunate to be surrounded by the most supportive and beautiful group of friends, family, neighbors and even a few people we barely know, who come out to support Trey’s Avengers on Walk Day.  This year was no different and we are so thankful to each one for helping to make it a great day.

This year we were joined by so many amazing people, including two other families who are personally affected by Type 1.

Trey had huge support from our amazing school here in Goochland County, Randolph Elementary.  Here he is with some folks from RES, including one of his favorites, his 4th Grade teacher, Ms Gates.

It was a great day for a walk.   Byrd Park is beautiful and makes for a lovely stroll.  Below is Trey with one of his biggest supporters, his younger brother Tarver.  Who at 8 years old can help Trey test his sugar, give him insulin and respond very well to dangerous lows.  T1D is a family affair.

And while, we are working away with our Trey’s Avengers events and fundraising activities, I am grateful to have a group of local T1D moms in my corner.  They each represent a different team, but we are all in this together.  The teams represented below helped raise close to $100,000 this year.  So proud of and thankful for these ladies.

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Our team would like to send its greatest appreciation to everyone who comes together to help raise money to support JDRF, Type 1 reasearch and our son Trey.  Every donor. Every walker.  Everyone who shared a positive word.  Every business that supported us. We were so excited  (and overwhelmed with gratitude) to share that we raised over $16,000 this year, bringing our 4 year total to over $51,000.  We truly could not do it without all of you!

$2,500 raised at Trey’s Avengers 1st Annual Cornhole Tournament

Wow!  What a day we had yesterday!  Our hearts are just over-flowing with gratitude for everyone involved with our first ever Cornhole Tournament!  $2,500 for JDRF! Where do I even start!

We filled THIRTY ONE of our thirty two spots – so close!  And we had a great group of people out.  Tons of spectators and friends!

We appreciate everyone who came out to join us – those who played, everyone who donated or bought raffle tickets, our volunteers, our friends and the fine folks at our sponsor, Hurleys!  The kid’s had a great time in our kid’s are and on stage, calling time, announcing games and pulling raffle tickets!   They were naturals.

One of this tournaments special rules was the ‘Cheats for Charity’ – $3 let a team jump around, steal bags and slap them out of the way all to increase their chances at victory.  We had one team swat a bag into the Bocce court!  Soo much fun to watch and of course, meant lots of extra cash for JDRF!

In the end, after almost 5 hours of play, our champions were crowned, winning a set of custom made cornhole boards.  Second and third place team took home Prize packs donated by Innsbrook merchants.  Congrats gentlemen, you all played hard!

 

Thank you all for your support!

Still interested in donating to Trey’s Avengers and JDRF – hit the DONATE NOW button on the top of this page.