Monday, February 27, 2012

February 2012: Advocating

Diabetes Social Media Advocacy
From the DSMA Website

Recently, the DSMA posted these thought provoking questions.  Since this is not a test and pretty much every answer other than "I dunno" is appropriate, I thought why not sit down and take a few moments to answer.

After all, much of my thoughts towards 2012 center around information sharing within the DOC.  It is my thought as a parent of Naturally Sweet Sisters, that this is the least I can do to advocate the need to further research type 1 diabetes, ultimately finding better treatments, technology and a cure.

We have to speak up and talk about what we need or nothing will ever change.

Q1. How do you get information about innovations in diabetes care?

Our family is active within the DOC and our city/state.  We participate in ADA and JDRF events like the Diabetes Health Expo, the Walk to Cure Diabetes and diabetes conventions.  We talk to suppliers, doctors and patient families.  Mostly we ask lots of questions!

Q2. How do you know when a new device comes on market?

I follow several diabetes blogs on the internet as well as subscribe to various medical magazines.  If I inadvertently miss a release, because we are connected through the DOC, someone often sends us a link for more information. 

Q3.What are some of the things you do as a PWD or a Parent of a CWD to share your needs with the industry?

As a Parent of a CWD, I speak up.  Part of being a responsible parent is advocating for your children.  I am their voice within the community to ask questions and to implement any better strategies for managing type 1 diabetes.  I have written to our goverment at a state and local level to express concerns on the artificial pancreas, I maintain a blog that shows the world what having diabetes means and I also co-manage a support group for parents of children with type 1 diabetes.    Through all of this is information sharing and gathering. 

Q4. Do you think your concerns are addressed in a timely manner?

No.  We have been living with type 1 diabetes for five years.  Little has changed except for finding our voices.  The need for better technology is still ongoing.  I can't even fathom a cure at this point.

Q5. Do you know how to find diabetes issues that the FDA is seeking comment from the public? do you comment?

Yes and I do respond. 

Q6. Do you advocate for PWD with the government? FDA, Congress etc.

Yes and we have received letters in return acknowledging our requests.  Some have been form letters obviously sent by aides, such as Debbie Stabenow, but we received one letter last month from Carl Levin that actually responded with his own plan on obtaining better care for PWDs.

Q7. What topics would you like to see discussed? What would you like to see more of?

Better technology updates with real life release dates. 

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