Category Archives: JDRF

Summit Diabetes

Earlier this summer, I received an email from a young lady who was embarking on an adventure that looked really interesting. I meant to take a much closer look sooner but the email came in while I was away and then managed to get lost in my inbox.  Today I decided to seek it out again and see what she was up to.


The young lady’s name is Haley Maurice.  She is now 15 and was diagnosed with Type 1 diabetes at the age of 7.  Her plan for this summer was adventurous for any teen but even more exceptional when you remember that she is living with type 1 diabetes.


“On July 16th, my brother Ethan and I will be backpacking 221 miles from Yosemite National Park to the top of the highest peak in the continental United States, Mt. Whitney, to raise funds for JDRF.


We’ll be trekking in this high alpine terrain for an estimated three weeks, conquering over 46,000 ft of elevation gain and venturing deep into the back country of the Sierra Nevada Mountains. It’ll be just us out there, with only two resupply points along the way to pick up more diabetic supplies and food to fuel us for the entire duration of the hike. We’ve been vigorously training and setting up our fundraiser for the past three months and are aspiring to reach our fundraising goal of $1000 per mile ($221,000) for JDRF.”


A few days ago, I hiked a 1.7km trail that has a 500 ft decent.  That was enough of a challenge for me.  I can’t begin to imagine 221 miles and 46,000 feet with blood glucose testing, site changes, insulin adjustments, treating lows, and carrying food and shelter.  I further was not sure how I would feel if it was my child with diabetes doing this.


Silly, of course I know how I would feel. I would be nervous and proud.  I would be terrified of all that could go wrong but would trust in the other sibling to help out in emergencies. I would be proud that my child would take on such an amazing adventure for a good cause.  I am guessing that Haley and Ethan’s parents probably felt much the same way.


In looking at the Summit Diabetes website and exploring some of their social media posts, I see that the two siblings were for the most part successful in their journey. Yesterday they noted…

“We made it!!! 221 miles of hiking from Yosemite to Mount Whitney!


Unfortunately, we didn’t make the top of Whitney as a freak snowstorm nearly froze us to death this morning just a quarter mile from the top.”


What an amazing feat! I am so impressed by these young people. I am impressed by their courage, dedication and stamina.  When Haley contacted me, she was asking for only one thing, for me to share her story and that is what I hope to do here.  Please look at their video, check out their website and the amazing pictures of their adventure.  If you can, also contribute to their goal of raising $1000 for every one mile that they hiked this summer.


Congratulations Haley and Ethan!

summit

One in Twenty

Recently the JDRF in the US took out an ad in the New York Times and elsewhere that has generated a lot of talk amongst people living with type 1 diabetes.  It simply stated that 1 in 20 people with type 1 diabetes will die because of hypoglycemia. It was geared to speed up FDA approval on the Artificial Pancreas Project.  

The fact that people die because of hypoglycemia is not disputed.  Those who have diabetes living in their house are well aware of its dangers.  We remind our loved ones to test and be in range before driving anything from a bicycle to a motor vehicle.  We wake up multiple times throughout the night to test and make sure that our loved ones are safe. We know that diabetes is a deadly disease.

Many were shocked at the figure however–1 in 20.  Many of us have hundreds of friends with diabetes listed on Facebook.  A quick scan would mean that five of every one hundred people we know will die of hypoglycemia.  That is terrifying. It brings the worry and the desire for a cure and better treatments to a whole new level.

Is that a bad thing? Jessica Apple discussed this in her recent post.  She suggested that November not be a time of feeling good and turning things blue but asking for change to save lives.  Over the years I have taken this same approach–take no prisoners and show the down side.  Yes my son can do everything his brother can but…. and its the but that should not be there. Its the but that allows him to live. Its the “but” that we need to change.

Its a fine line however in giving your child hope and showing the world the darkness. I like the power of the JDRF ad but fear my son seeing it. While I present the dark to politician and the general public, we focus on the positives at home.  

As a parent though, when I stop, personalize the statistic and think of 20 children with Type1 diabetes including my son  and then realize that any one of them including my son will die of hypoglycemia? I just can’t go there. I cannot spend more than a second on the thought. It makes me ill and shakes me to the core. My heart is crushed and I am terrified. Maybe that is not the worst thing either.

That fear motivates me to work harder.  It makes me want to spread information to a larger audience. It makes me want to focus more on ensuring access to things like pump therapy and a CGM for my son and the 19 other children (of all ages) whose lives could be saved by better technology.  It also makes me want to take a harder look at the work of the DRI and other groups who claim to be working for a cure. 

One in twenty people living with Type 1 diabetes will die because of hypoglycemia.  That stark number needs to change. We can work to prevent this. We can work to “fix it”.  As a parent, I cannot fix my son’s body and take diabetes away from him but I can work to fix a system that keeps lifesaving tools just out of reach.

This disease is serious.  We need to be equally serious about keeping out loved ones alive and providing everyone with access to the tools to do so. We would not deny someone who could not walk a wheelchair.  We cannot deny someone who cannot produce insulin the tools to deliver and monitor this lifesustaining liquid.

Cure Funds

Recently JDRF announced that it was giving money for a Johnson and Johnson artificial pancreas research project. The other day I also noticed that they were involved in another research project with BD. I will readily admit that I have had very little to do with the JDRF since my son’s diagnosis. They are virtually non-existent in my area. I subscribe to some of their initiatives and occasionally follow some of what is being done but I am not involved with them regarding any fundraising or support.

The people that I have seen supporting them however have been very diligent. Families who create walk teams seem to go to great lengths to fundraise and let everyone know that they are “Walking for a Cure”. I therefore began to wonder how these same people felt about their “cure” money going towards diabetes tools research. Don’t get me wrong, tools are what keep my son alive. The great advances in tools are vital to me until that day comes when he or others living with type 1 diabetes can be cured. I spend a lot of time advocating to get these tools in the hands of all people living with diabetes so I am definitely in support of this sort of research. My question however, was for those who had “walked for a cure” and now saw their dollars going towards treatment.

Organizations like the Diabetes Associations openly state that money raised for them goes into a variety of pots including research and development. The JDRF website states that its “mission is to find a cure for diabetes and its complications through the support of research. ” For many that sort of a statement would suggest that a cure is its only focus. People that I have spoken with have been rather taken aback by these announcements. Some feel very betrayed while others are shocked but accepting. Many living with diabetes feel that they can still support this and feel that it is okay for them to spread their focus to living with diabetes and well as working towards a cure. Still others are sitting back scratching their heads. These people are not so sure that this is where they want their money and efforts to go any longer. Sadly there are many other organizations that would gladly accept their support.

I have no idea if this public support for techonologically based research will cost the JDRF any support or not. I am happy to see any advances that will keep my child alive, healthy and happy until that day when someone does finally discover that cure.