Diabetes Awareness Month

 

Why I Advocate

During Diabetes Awareness Month I reflect on how I became an advocate and why we need a cure!

My son was diagnosed about five years ago at the age of 8, I was in a fog familiar to the newly diagnosed.  I’m probably still in it!

We had been fundraising with the JDRF from the start, but through a series of events encompassing “Hunter’s Law” in Indiana, ADA Safe at School, and Nightscout Foundation/#WeAreNotWaiting, I discovered advocating.

I learned then that when people come together for good, they can change things.  Even if they don’t know each other they can be inspired by each other’s stories and be compelled to help. Even if it’s just a little change, which often it is, it counts to the people on the ground who are directly affected.

The diabetes community has a fire and a tenacity that is inspiring - the fire is strong.  I see it every day on Twitter and around the social media blogosphere.  People are coming together for a common cause; whether that be insulin pricing, to Safe at School, to building an artificial pancreas, people every day are fighting for their lives or the lives of their kids.

So many have no choice but to fight, which is what happened WAY back in 2015, when Indiana’s Safe at School Act (nicknamed “Hunters Law”) was at risk of repeal.  My son was less than a year into his Type One diagnosis.  At that time, I was I barely treading water as the parent of a newly diagnosed child.  Somehow, I got to Facebook, which was a treasure trove of people in the same boat.  As a Dexcom user I was following the “#WeAreNotWaiting” Facebook group. This is a group of passionate T1D parents who was trying to create a better, safer Dexcom.  I was also following the ADA Advocacy Facebook group and that is when I saw an alert stating that Hunter’s Law in Indiana was about to be repealed and to please help. 

I really had no idea what I was doing, but I followed ADA guidance to contact the local legislative representatives there.  The word got out in several Type One social media groups, including the “#WeAreNotWaiting” group.  Everyone was positively engaged that day, and between Twitter and Facebook many people came together to rescue Hunter’s Law.  His family’s hard-fought battle was about to evaporate, but this community was trying to not let that happen. Hunter may not even be aware today how so many people inside and outside his home state were rooting for him to win and he did! 

This day was a catalyst for me to see change in action. From then on, I have seen social media CAN be used for positive change.  I have so much respect and admiration for these families and groups.  Most have Type One or care for someone with it- Type One is not easy to live with and yet they accomplish so much.

Today all these years later I am still moved and reminded why ultimately, we need a cure, There is still so much work that needs to be done, and that’s why I advocate. 

Please visit the Link We Love tab on my website for more information on these advocacy and fundraising groups.

Thank you for reading!

Sources

1. http://www.diabetesforecast.org/2015/sep-oct/people-to-know-2015-hunter.html 
2. https://www.depauw.edu/news-media/latest-news/details/33983/#:~:text=As%20a%20youngster%20Sego%20lobbied%20lawmakers%20to%20approve,administer%20life-sustaining%20supplies%20to%20help%20throughout%20the%20day.