Hold on folks, it’s about to get fun!

Last meal before I go in. I stayed in the Navy Yard last night and there is a bistro with lots of coffee and some good breakfast sandwiches.

I had intended on getting up and going for a run, but considering my excitement level, and therefore, lack of sleep……I’m on plan B.

So I am sitting here listening to the talking heads discuss the future of America. D or R, and which guy is going to be the best option for all.

I’m not going to discuss politics here. T1D affects everyone. 40 kids and 40 adults are diagnosed every day in the US. Race, socio economic status, no matter.

What I will mention is how we have gotten to the point where we consistently receive significant funding from the federal government.

The JDRF has great volunteers who call on, and set meetings with our representatives across the US. They discuss what T1D is, the research from JDRF for the 3 legs of focus: cure, prevent and treatment. They review the financial burden that T1D is on the healthcare system and what it costs to fund the research that will improve care and outcomes for those with T1D, decreasing the burden on our healthcare system.

These facts alone do no secure the funding JDRF receives from the federal government.

What secures this funding, year after year, is how strong of support JDRF receives from the families of those with T1D. The grassroots efforts of these families, their determination, and ultimately, the amount of money raised at the grassroots level is what the federal government looks at. They see the numbers of people and their dedication to solve this problem, and they believe that JDRF folks are going to provide for a return on the investment of the federal government.

The point is, we have to keep fighting at the ground level. We have to take ownership of our management, but in addition, we have to take ownership of the solution.

Why would, why should, anyone else fight for us if we don’t fight for ourselves?

Ok, enough of my non-linear thoughts for now. Time to get to he hospital and kick the tires. Not supposed to be there until 10…..think they’ll mind if I get there early and take the AP for a spin?

First….more coffee.

2am
Probably too early to go to Mass General to get started w/ the study.

Accepting ideas for the official name of “my” artificial pancreas.

I want to talk about family a little bit. I have said some of this before, but even if I am repeating myself, it’s worth saying again.

The family members get it just as bad as the T1D’s or worse.

For example:
1. My mother was my primary care taker growing up, and scared for my life every second of the day. Guaranteed I am the sole reason for her alleged gray hair and constant anxiety.
2. My brothers were ignored because my care was a primary issue.
3. My friend has 2 of 3 sons with T1D and the son without feels left out.
4. My children often suffer the consequences of my disciplining them when my blood sugar is too high or too low.
5. My wife tolerates my social decisions based on what my blood sugar is rather than me relaxing and having fun.

Non of this is fair for them either. And they can’t complain because they aren’t T1D. They feel guilty for even thinking it.

T1D is a family disease. It affects all members of the family in one way or another.

Now, this isn’t a Debbie Downer message, because the solution is also family driven.

Ask my brothers what it has been like for them to participate in the Hope on 2 Wheels and JDRF Ride to Cure Diabetes events.

Ask the Papola family what it has meant to them that Tony is involved in the JDRF Ride to Cure event and what it has done for their overall family fitness.

Ask the Harleysville Bike Works shop manager, Jason Meyers, what it has meant to his wife, that he has decided to participate in the JDRF Ride to Cure event next year.

Ask Hope on 2 Wheels Co-Founder and JDRF Ride Coach, Scott Kasper, what it has meant to his non-T1D son, that he will be able to ride for his brothers.

It’s a family affair all the way around: management, fighting for better care and fighting for a cure.

If you have T1D, thank your family for having your back. Remember that when they ask you what your blood sugar is, it’s not a challenge, they are just concerned.
If you are a family member of someone with T1D, thank them for taking ownership and taking care of themselves.