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!

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.

Trey’s Avenger’s 2016 Cornhole Tournament

This year we are so excited to mix things up and try our hand at a new event – the first ever Trey’s Avengers Cornhole Tournament.  Scheduled for Sunday July 17th – this won’t be your normal Cornhole Tournament – we are planning a few “Cheats for Charity” that will kick up the event and make these games really entertaining to the last.

Each two person team will receive two free drink tickets and will be eligible to win the tournament Grand Prize – a custom made set of Cornhole Boards – make to the winners specs!  They are awesome.

The events are not just for the cornhole teams.  We will have drink and appetizer Happy Hour Specials all day for everyone.  And a dedicated kid’s are staffed by volunteers to entertain the half pints so parents can sit back and enjoy a beverage and some food in the Innsbrook Courtyard.

A huge thank you to you sponsor – Hurley’s Tavern – who will be providing awesome food and drink specials all afternoon.

So stay tuned to our Facebook event page for updates and details.

Want to join us – you can register your team today here.

100% of proceeds go directly to JDRF One Walk RVA 2016 to help find a cure for Type 1 Diabetes.

 

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About Trey

As you know, Trey’s diagnosis came without warning and currently, without a cure. It was not caused by something he did or ate.  Trey has been so amazing.  Trey has learned to be an active, fun-loving boy of ten and at the same time manage a life-threatening chronic illness.

Thanks to technology advances developed through past research initiatives funded by the JDRF, 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.  His Continuous Glucose Monitor (CGM) measure his blood glucose constantly, allowing us to monitor his levels remotely from an iPhone (yes that is very cool technology!!).

Although Trey still has many finger pricks per day, multiple infusion set insertions per week, has to count every carb he eats and administer insulin for his meals, he an adventurous, happy and otherwise healthy 10 year old boy.  He excels in school and loves math and science – future biologist or endocrinologist in the making perhaps!  He loves to read – his favorites are Happy Potter and Percy Jackson.  And he loves the great outdoors – rock climbing, kayaking, swim team and camping with his family.  We are so proud that his Type 1 diagnosis has not slowed down his love of adventure.

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.  He did amazing on stage in front of hundreds of people sharing his story.  He has also chosen to have his birthday party guests donate to JDRF instead of birthday presents.  Our family also volunteers at the gala, serves as the Mentor Chair for newly diagnosed families and occasionally speaks at JDRF events.

JDRF Gala – 2016

The Annual JDRF Gala is an amazing event and for the past few years our family has been fortunate enough to be given the opportunity as volunteers.  At the Gala we help raise over $250,000 in one evening with the help of amazing attendees, corporate sponsors and auction donations and winners.

This year I (Danielle) was asked to be one of the event photographers.  Capturing the perfection of this event at the Jefferson Hotel was so much fun.

But of course, my favorite part (to watch and photograph) was Trey as one of the JDRF Youth Ambassadors.  He has a few responsibilities as Youth Ambassador, such as writing Thank You notes to donors.  But the best part is one of the last events of the evening – the ‘Fund A Cure’ Auction.  Each of the kids is “auctioned” off at a set dollar amount.  Because it was his 10th birthday that night, Trey was given the $10,000 slot.

Each Ambassador was also given a moment to tell a bit of their story of being a Type 1 Diabetic – how it affected their lives or why they hoped for a cure.  I sat in the audience with tears in my eyes.  Trey did awesome and made us all proud.

 

Thank you to our Donors & Corporate Sponsors

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Each year we owe a tremendous amount of gratitude to our corporate sponsors.  They help to contribute almost $3,000 to our efforts to support the JDRF.

So first, our thanks to our tee-shirt sponsors.  There generous contribution earns them a spot on our tee shirts.

 

Additionally, our gratitude to the many businesses who donate amazing raffle tickets to our event each years.