A Day in Madison

Madison, the capital of WI. The city were all the individuals in state legislative positions come together to sit and discuss so many things that will effect our lives from state taxes, health care, tuition costs and so much more. And then there is me. A mom of a 3 year old CF’er ready to embark on a journey to sit and tell our story. A story that has meaning so when it comes to new regulations to be created or voted on, they have Maddox in mind when they are voting. And to be honest, this entire process wasn’t that scary.

The WI CF Advocacy day was originally scheduled to happen in February before Maddox’s surgery but due to typical WI winter weather, it was rescheduled due to a snow storm. The CF Advocacy event starts with a webinar to debrief us on the overall agenda and what to expect. Then we travel to Madison and to a hotel that is right across the street from our beautiful capital building. The night before the event, we sat down to a dinner to introduce ourselves so we are not complete strangers to each other and to learn each other’s stories. In the room were CF doctors, CF nurses, advocates from the National CF Foundation and a few of us family members. After eating dinner, we were given our packets and the outline of what to expect. Not to scary at this point.

We were broken into four groups and were able to learn more about each other, why we were there, how much we knew about CF and to learn about the people we were going to meet with the next day. I really don’t follow the political realm because, to be honest, I just don’t have the time. The teams briefed us on what was happening at the state level with the new governor, what were hot conversations (the state budget), where the sides stood on the conversations and where we fit it. It was super easy as they had talking points of what we should say to stay party neutral and to get our message across from the CF perspective. We practiced our speech that we wanted to present to our elected officials. My team included Pat a nurse from the CF team in Milwaukee, Zoe, from the CF Foundation, and Erin a CF mom of a 20 year old from the Fox Valley. So many connections and cool stories.

The next morning, we had a breakfast together, went over the final details and we were off together walking across the street. It was exciting to be able to walk into the capital to tell your story of something you have a passion for that is near and dear to your heart. Don’t get me wrong there were still nerves, but knowing we were going into it together was exciting. They were willing to take the time to listen to us.

Our first meeting was our most important meeting as were meeting the team that was the co-chair for the finance committee working on the new budget and the asks we had dealt with the budget. To keep the details short, we asked to consider to fully expand Badgercare to cover Wisconsinites earning up to 138% of the federal poverty level and to ensure adequate funding for CF Related programs like the Wisconsin Chronic Disease program and Badgercare. While at the moment Maddox doesn’t participate in these programs, I was there advocating on other CF’ers behalf that are currently using it and to continue to keep the programs alive if it gets to the point that Maddox would ever need it, it’s there.

We had a chance to meet with 4 different office teams and each were willing to listen to our entire story. Some appreciated the visits while others were extremely interested and asked a ton of follow up questions. Since the budget is being pulled into so many different directions, no one knows how it will end but these teams heard our stories and can have back up examples in support of our asks. Now, to see if we can get Maddox’s story told in Washington D.C. for the national CF Advocacy days!

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