Disclosure: Diabetes Hands Foundation provided me with a scholarship that paid for my flight, hotel, and registration to the MasterLab workshop. All opinions are mine.
I’ve been doing some thinking, some introspection. As I have shared before, I started this blog as an outlet for myself. Soon, I realized that by sharing our story I am also trying to make the world a friendlier place for my daughter and all other people with diabetes. But what lies beyond sharing our story? What diabetes-related issues do I want to focus on? What organizations do I want to support?
In his opening remarks at MasterLab, Scott Johnson talked about paying attention to and feeding “your fire.” That message struck a cord. I want to advocate for something I am passionate about, something I truly believe in, something I can throw myself into without any reservations. I need to advocate where my heart is.
My heart is with #DiabetesAccessMatters. Having diabetes is hard enough. We don’t need constant battles to get access to and coverage for needed diabetes supplies. We don’t need insurance companies to play doctors and tell us what treatment is better for us. We don’t need to worry about being able to afford insulin which, for Type 1 diabetes, is literally a life-saving medication.
My heart is with diabetes tech. Sure, a cure would be nice and it will hopefully happen one day. In the meantime, diabetes tech is what continues to make the biggest difference in easing diabetes burden, improving safety and effectiveness of diabetes management, and improving overall quality of life.
My heart is with Riding on Insulin, and not only because they organize amazing adventure sports camps for T1 kids. ROI people are the kind of role models I want V to have in her life. I want her to be around T1’s who can show her via their actions that everything is possible and who will encourage her to follow through on her goals, challenge herself and live her life to the fullest. I am determined to continue my fundraising for ROI until I reach and surpass my goal.
My heart is with Camp Conrad Chinnock. Diabetes camp is such a special place for T1 kids. It’s a safe place where they can be totally free and where everyone “gets it”. I want to make camp work weekend a family tradition so that every year we can help get camp ready for summer. I may also fundraise for it in the future and participate in other volunteering events/functions. And while I am not officially fundraising for camp now, I have selected it as my charity via Amazon Smile.
My heart is with being a patient voice on behalf of my daughter. I want a seat at the table with health care providers, tech developers, policy makers, drug and device manufacturers, and other involved parties. We are all in it together and I want us to have a joint discussion on how to improve care, access and quality of life for all people with diabetes. I’m getting that seat at the table, literally, at the Diabetes Mine Innovation Summit in October. I am so honored to have been selected as one of the Patient Voices winners.
Not long before I left for MasterLab, I created a new category for my blog: advocacy. Looks like it’s going to get quite a workout. Chaaaaaaaarge!