Advocacy: You’re invited.

When it comes to diabetes and advocacy, it’s interesting to note that the one thing we might all have in common (other than a messed up pancreas) is that we’re all different.

Some people are dedicated to connecting others, either because it’s what they want to do, or because they see a need and want to do something about it. To that end, Cherise Shockley’s @WOCDiabetes Twitter account serves both purposes. It connects women of color living with diabetes so they have a place to share common stories, connect with one another, and feel like they’re not alone.

Some advocacy organizations want to focus on research, while others want to focus on policy and education. They all serve a purpose. But they’re definitely not all the same.

There are non-profits like Tidepool, which provides a platform for people to upload their device data and other important information, and then share that with their health care team, and also share it anonymously for research. That’s a lot for one organization.

There are #OpenAPS groups all over the country, helping people put together their own closed loop insulin delivery, even before any industry-developed options are even approved by the U.S. Food and Drug Administration. And non-profits like Bigfoot are using their talents to develop solutions that could make our lives even better. Where would we be without the inspired leadership these groups provide?

There are individuals who participate in clinical trials, sometimes multiple clinical trials, who often thanklessly help advance research into treatments, drugs, and devices designed to make our lives better. You’d be hard pressed to find a more noble endeavor.

And there are still thousands of us out there blogging, podcasting, and using other social media to tell our stories and the stories of others living with and affected by diabetes. The result of all this output of storytelling is increased access to information, viewpoints directly from the patient, and connecting others who are living the same kind of existence.

Where am I going with this? I want you to know that there are many different types of advocates and advocacy happening in the diabetes world today. And certainly, you can be a part of it.

On a personal level, I’ve always participated in things that I feel meet one (or more) of three criteria:
1) It’s interesting to me
2) I’m good at it
3) I am actually allowed to participate

That criteria has kept me from participating in the JDRF Ride for a Cure events (not good at fundraising), and some clinical trials (didn’t meet the criteria, so not allowed to participate). But it does mean that I’ve been able to attend and report on FDA public workshops (interesting to me), and serve as a part-time moderator of the Wednesday night DSMA Twitter chats (I’m good at it and allowed to participate).

Wherever you are in your diabetes journey, know that there are many opportunities for you to step forward and learn, connect, and volunteer. If you have even a sliver of time and a passion for doing something that could help you as much as it helps others, there is a place for you.

All of us will benefit from your participation. And I will be forever grateful for your selfless dedication.

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Comments

  • Rick Phillips  On March 27, 2018 at 6:09 pm

    I have a little different criteria than the 3 really good ones you mention. My criteria is if it is fun. If I am not having fun (not laughs but fun), then I do not need to keep doing it. First fun, then your list of 3 for me.

    Liked by 1 person

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