CF Advocacy

Yesterday, I received an email that I was excited to read. I have been added to the CF Foundation – Wisconsin Advocacy Team. Yea!! What did I get myself into?? 🙂

One of the posts that I followed on the CF Wisconsin Facebook page was seeing representatives(parents) from WI in Washington DC meeting with our Senate and House of Representatives and sharing their stories and being a voice on why the representatives should vote a certain way with the new legislation that is being proposed. They were in their offices, telling their stories that these representatives will understand what we, as caregivers,  go through.  And I thought to myself, I want to be there. I want to tell our story to help find a cure.  I want people to know my son and his journey.

A quick email off to the CF Foundation team, a few questions later and the email came, We Welcome  you to the Advocacy Team. We are excited to have you on board!

The WI state chapter is currently putting together a game plan to meet with our local state representatives (we are considered district 6 on a map) when they are in session and when they are in our local communities. Then in February and March, the communication and game planning to head out DC to be a voice on a National stage. I am pumped!

In November of 2017, I had a chance to head out to DC to be an Advocate for HR topics and this February, I was at our State capital meeting with our local reps for more topics. We had a great chat with one of our local reps that we are now following each other on Twitter.  That’s why they are voted in, right? To hear what their communities they represent are struggling with and be a voice on the assembly floor. Some individuals actually listen, some individuals have let the power get to their heads. Either way, I get a chance to sit down and speak with them and tell them our story! I can get a chance to share why we need to continue to press for research, why HealthCare options are so important, and what pre existing conditions truly means to individuals like Maddox. I want them to understand how strong these CF Individuals are and what they go through to be able to have a ‘normal’ life style as best as they can.

As more develops on this, I will share what I learn and this journey!

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