Bike back across America Dec 2017-Feb 2018
Dec 16, 2017 from the Santa Monica Pier, CA, Noah's Father, Robert and new found friend Matt Nyland will bicycle across America, ending in Savannah, GA Feb 17. Noah continuing his March for a Cure is chatting with diabetes groups, researchers in the diabetes community and media. Noah explains, "I just want a cure cure for diabetes, and I won't stop until I have one, but I can't do this alone. We are so close to a cure and I need your help."
We finished CH 2 at Tybee Island Pier, GA on Feb 17.
Here is the plan for the rest of 2018:
Noah and his family have been living out of a Jeep Wrangler for over a year. Once Robert & Matt finish in Savannah, GA now the second chapter of Noah's March is complete.
We will be sharing everything we have learned in 2017, as soon as we get home. We have so much we want to discuss, but we just haven't had the time to get it posted. This is a preview of some of the points we are going to be chatting about.
We are not clear where home is going to be, which is freaking Noah's Mom out a little, but we will have this all figured out in Feb.
We have so many lessons, tips and information about so many things involving diabetes. We are really focused on connecting with type 1 diabetes groups and type 1 research teams to get the most up to date and accurate information. We are in a technology revolution, where the speed of research is moving faster than it ever has in history. The great news is, we are taking great strides in what we know and understand about diabetes. The bad news is the things we thought we knew, may not be true. For example, adults are getting type 1 diabetes. No one seems to be able to give a clear explanation on why. Either adults have been getting type 1 this entire time and they were simply misdiagnosed or there is a alarming uptrend in adult onset type 1 diabetes. According to the American Diabetes Association from 2006-2015 we saw a 300% increase in type 1 in children. That is an alarming statistic.
We meet with a number of research groups and we want to share what they are doing to find a cure. We will be updating information as we have time to get it organized.
University of Florida Diabetes Institute http://diabetes.ufl.edu - Dr Brusko is about to announce his latest discovery.
University of Chicago Kovler Diabetes Center https://kovlerdiabetescenter.org - Has discovered that not everyone diagnosed with type 1 diabetes is actually has type 1 diabetes. If you were diagnosed, 6-12 months old, contact them immediately to see if you qualify for their screening. In an over simplified explanation: at such a young age the body gets a little confused and the pancreas slows down insulin production. Visit their website for more information.
Emory University http://diabetes.emory.edu - Emory University has partnered with a Global network in the quest for diabetes research.
Vanderbilt https://www.vanderbilthealth.com/diabetes/ - The Vanderbilt Eskind Diabetes Center is one of only three diabetes centers in the U.S. accredited by the American Diabetes Association for treating adult, children's and gestational diabetes.
Babara Davis http://www.barbaradaviscenter.org
Benaroya Research Institute https://www.benaroyaresearch.org - Benaroya Research Institute at Virginia Mason (BRI) is one of the few research institutes in the world dedicated to discovering causes and cures to eliminate autoimmune and immune system diseases. At BRI, our scientists aren’t focused on eliminating one or two autoimmune diseases—we’re taking on all 80.
Pharmacutical companies is a hot button with anyone managing diabetes.
The most alarming is the "free" healthcare of Canada is about impose a "tax" on diabetics. We will be paying close attention to this throughout 2018.
We had a chance to chat with a few reps of Nova Nordisk and ask them exactly how they are "doing research for a cure?" There are basically 4 medical stages of a type 1 diabetic. Stag 4 is the clinical diagnosis, this is when most people find out they are a type 1. Like in the case with Noah, we spent 5 days in a hospital, 3 days in an ICU. To cure diagnosed stage 4 in a type 1 diabetic is extremely complicated. Unfortunately none of the pharmaceutical companies are doing any research in this area. They explain, there is no money in it. So what exactly are they doing. Research groups like Benaroya Research Institute in Seattle is really focused on identifying stage 1 & stage 2 in type 1 diabetics (before the body starts attacking itself). When we went to Benaroya Research Institute, they explained that the ingestion period can be 2-7 years just depending on a variety of factors. If they could pin point who was was at risk, then a pharmaceutical company could produce a pill to prolong the ingestion for 10-15 years. Which beneficial, but not exactly what we define as a cure. The other issue with research for type 1 and children, is that the FDA is SUPER conservative on what they will allow to be tested on humans.. Basically you would need to get something that looks like it works and then test in adults, then after a few years, test in 18-24 year olds, then after a few years 16-20 years olds an so on. As long as there is no complications we should have a cure by 2050. Not exactly the information I was hoping get from them. It is good research, but prevention is not our focus.
JDRF & American Diabetes Association
ADA ironically was far more supportive than JDRF. Which really surprised us, since Noah being a child with type 1, you would think the marketing people at JDRF would seize the moment. JDRF saw us as a competing non-profit and just stayed away. The exception was Denver & Biose, both cities, the people understood the impact Noah was making and rallied to help, by stepping out of their guidelines. The ADA offices were mostly good. The more organized ones really benefitted with free media, the not so organized ones just missed the opportunity. An example of the largest missed opportunity was Portland, OR. The Portland Trailblazers' head coach walks for exercise. He had heard about Noah and wanted to invite him to a game. A few days before we were going to the game, I saw on a newsfeed that Ivan Turner had just donated $50,000 to the local ADA office. We are happy to see that atheletes like Mr. Turner made such a generous donation and wanted to personally thank him. The day of the game we arrived early, to meet the coach, Mr. Turner and do some media. Everything goes very well. The coach is really surprised how young Noah is and Mr. Turner is just a really nice, out going gentlemen. Noah had a great time. When the TV broadcasts came out that evening, the reporters explained that Ivan Turner had given the $50k to the ADA in honor of Noah. Which was not true, he had given the money before even hearing of Noah. Many people in the Portland area were impressed that Noah was able to achieve such a large donation. We never met with anyone from the Portland ADA office.
When we contacted the offices around the country, we always get the same line "We are understaffed and overworked." Which I completey understand being understaffed and overworked.. What I never could understand, is that here is a child breaking a world record managing type 1, just so he can bring attention and awareness to type 1 and no one from your office had 10 minutes to meet him, even for a photo. I'm sure there are hundreds of great people that do amazing things that work for these organizations, unfortunately we had the honor of meeting just a handful. We will be discussing what is the focus of the 2 big diabetes organizations, what are they doing, where does the money go and ultimately are they making a difference. Juvenile Diabetes Cure Alliance performs an audit of the big 2 and posts it publicly on their site. http://thejdca.org
We have meet some amazing people & groups that have really filled the gap supporting their type 1 communities. Some states have really good programs and some states need a little more attention. We will updating our site with resources and information.
Georgia - The Jones Group http://thejonescenter.com
Idaho - Hodia http://www.hodia.org
Diet & Exercise
This has been the most complicated topic to cover. The main reason is that everyone is different and how things work for one person is not going to work for everyone. We will discuss some things that can be broadly applied to everyone. Then we will start digging into specific things that may work for some people, but not for everyone.
Yes you definitely should be exercising, walking, biking, swimming, or anything that gets your body moving. We will chat about how much exercise is optimal, but in reality, there is no excuse, get off the coach.
We have heard from a number of people altering their insulin intake by specific dietary changes. We look forward to interviewing them and then testing their programs for ourselves.
DISCLAIMER - We are not going to be polite in this section. There is so much "Bad" information out there and we just want people to know the truth. If you are selling a "magic bean" and it is crap, please don't contact me.
We will share some management tips that we learned along the way. We will also refer some experts in insulin management. DISCLAIMER: Everyone is different and we are not implying that one size fits all. The one thing we have learned, that each day is a new day with new challenges. What worked yesterday can be completely different today.
Insulin reacts differently when conditions change. For example, altitude changes how long insulin reacts in the body. At sea level, Noah's short acting insulin lasts about 2 hours, when we got up to Denver, it was lasting 3-4 hours. When we got to Frisco (8000 ft) we really couldn't tell how long it was acting. we estimated 5-6 hours. We ran into stacking issues at higher altitudes.
Things that do impact insulin: Altitude, Temperature, Humidity, Heart Rate & Physical Exercise. We will go into great detail using Noah as a baseline, so that you can have something to compare to. Everyone is different and things will adjust.