Readying for the JDRF Death Valley Ride: The one where I give YOU all the credit

October 13, 2015By 2 Comments
Lauren and me training for the JDRF Ride!

Lauren and me training for the JDRF Ride!

It’s time for me to gather all my ride gear and pack it again. This time my destination is Death Valley, California where I’ll be riding with a great group of advocates determined to kick Type 1 diabetes in the butt. I’m excited to see them all and feel the amazing vibe of teamwork toward a cure once again. But right now, I don’t have them on my mind. Instead, I’m think if you. You the donor and friend and supporter who has done so much for me, my child and for life with diabetes for so long now. I know when you donate each year (and many of you have donated every single year since I started working toward a cure 17 years ago; one year after Lauren’s diagnosis. PS Look how cute she was then! WATCH THIS!!! , you do it for our ultimate goal: a cure for Lauren. But I’m not sure you realize that with your donations over all these years, you have already changed her life. True, she still battles diabetes not just daily but hourly. Yes, it complicates her life at every turn. And indeed, it’s burden few can truly understand. But everything – everything – has changed in the past two decades of this life with diabetes. And that’s because of YOU. Let me give you some examples of how you personally have changed my daughter’s life for the better with your donations. INSULIN: When Lauren was diagnosed back in October of 1997, there were two kinds of insulin for her to use: NPH and Regular (there was another long acting but that was the best choice for a child at that time). Life on NPH and R meant constant balancing of peaks of insulin with food. Friends at my Beach Club were so tuned into the absolutely need to stay completely on schedule that at 10:15 and 2:15 every day, literally the entire club would yell “Lauren! 15 grams of carb!” (We have amazing friends). There was very little ability to tweak her eating schedule (and god Bless our school principal who yearly set the entire school lunch schedule around my child’s timing needs!). It was a very regimented and difficult way for a child – or anyone – to live. Now there are many insulin choices. A person with diabetes can pick and choose to tailor their insulin routine to the lifestyle choices they like. Yes, you still have to take shots and yes, you have to carb count and no, insulin is not perfect (it’s crude at best! But it’s better!). How did you help with this? I was lucky enough a year ago to be at the Death Valley Ride with Novo Nordisk CEO Lars Rebien Sorensen.  We chatted for a long time about his desire to be part of the cure. He said to me, ‘You know, were it not for groups like JDRF, we’d be no where. It’s thanks to you we can work toward this goal.” WOW. You. He called out you, my donor friends. TOOLS: Lauren’s first meter was huge and took almost a full minute to count down. It took a “hanging drop of blood” as well, something not easy to get from the tiny fingers of a kindergartener. In addition, when we first considered pumping for Lauren we were told ‘When you can drive a car you can drive a pump.” Today, all kids of all ages can pump. Meters are small, take a tiny bit of blood and count down in five seconds. We have continuous glucose monitors that talk to pumps and some day soon we will have smart pumps that actually do the work of dosing for a person with diabetes. This all is thanks to you as well. When CGM’s were first introduced, no one was biting. Insurance was not covering them and companies were not motivated to invest in creating them. What JDRF did was incredible. JDRF, one case by one case (I know because I was one of the volunteers doing it!) got insurance to cover folks. At the same time, JDRF stepped up and funding clinical trials of CGMS in multiple centers across the country. Those studies took time and a lot of money but when they proved that CGM’s improve not just daily living with diabetes but the health outcomes of people with diabetes using them, the field exploded. I can say with confidence that were it not for your donations to fund that, Lauren might not be using the wicked cool CGM that talks to her smart phone (and that she can even let me see from far away – I even checked in on her current blood sugars while in Ireland a few weeks ago!) You funded this incredible leap in diabetes care. And soon, when Lauren can use an “Artificial Pancreas” which will still take some work but will remove much of the moment-to-moment stress of diabetes she has now, it will be thanks to you. BREAKTHROUGHS: 17 years ago I could not even imagine that islet cells could be produced in a lab, placed in a body and made to produce insulin. And yet, the first human clinical trials to do just that are in place. How did you make that happen? Back in the early and mid 2000’s, you joined me and JDRF in pushing for stem cell research – and we won. Today, out of the lab of Dr Doug Melton of Harvard, stem cells can be made to grow into islet cells that produce insulin. This is perhaps the major breakthrough of our lifetime in diabetes, and it came very much thanks to your donations. Those cells are being used in a human trial at a company called Viacyte. Imagine if one day in the future all Lauren has to do is have this device implanted in her body every 18 months to two years? And that’s all she has to do? Incredible! There are similar trials of similar products in Canada, Israel and at the Diabetes Research Institute in Florida – all supported by your JDRF donations. CURE: And while all this progress has made Lauren’s life better and will continue to, your donations have also kept pushing us toward a cure. All kinds of amazing things are being discovered in labs around the world. Like the idea that our gut bacteria may have something to do with this all. And that all people with diabetes –even 50 years in – still have some functioning beta cells (Combine that with the knowledge now that pregnant women have their beta cells produce more beta cells and you’ve got something to study closely!) Cures take time, and your donations continue to help. So as I pack for Death Valley, I’m thinking of you. You have changed our lives with your funding of progress and a cure. But you’ve also changed it in another way: Lauren, Sean, Leigh, Michael and I (and all our cats too!) get to see, feel and know – every single day – that the world is a good place. That our friends care. That people go out of their way to help us because they are just plain awesome human beings. So thank you. Thank you for the changes and advances. Thank you for the constant support. Thank you for the – are you ready for this? – close to ONE MILLION DOLLARS my friends have donated and raised for us since Lauren’s diagnosis.

A look at the route of the Death Valley Ride. I'll be there Saturday, thinking of you.

A look at the route of the Death Valley Ride. I’ll be there Saturday, thinking of you.

Thank you for giving me incredible moments along this challenging route (Check out THIS PODCAST for one of them!)   Thank you for giving me shoulders to stand on as I yell out my dream. We are truly blessed.

Filed in: AdvocacyAPPAPP trialcool new diabetes toolscurediabetes diagnosisdiagnosisfeaturedFundraisingglucose meterInspirationInsurance and diabetesJDRFJDRF RIde to CureUncategorized Tags:

Comments (2)

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  1. StephenS says:

    Best of luck Saturday! Somehow, I don’t think you’ll need it.

  2. Chupacabras says:

    No matter the destination or the distance, finishing the Ride is a beautiful and heartwarming moment that brings me back each year.

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