CFF Advocacy Journey has begun

Elected officials; the individuals that spend a ton of money on their campaign to tell us all their big dreams and ambitions to make life better for us on our behalf. Their name is on a ballot, a sheet of paper, that is handed to us during our 30 seconds we take to vote on who will represent us. Most of us of have never heard of their names, most of us have no idea who these people are and we just fill in a bubble next to their name on the sheet of paper. The votes are tallied, they win and they represent us. Typically, we never really hear of their name again until we turn off the TV commercials or throw away their fliers and see their names again on the next ballot.

Representing on our behalf; an interesting concept. How are they supposed to know whats going on unless we actually talk with them? Great question and enters my new adventure that I volunteered for. The CF Foundation posted pictures of representatives meeting with elected officials talking to them about the new bills that are being proposed. I had experience on the HR front and immediately emailed them stating, “I want to be there next year, what do you need from me?” Fast forward a few months and we had our first conference calls this week for the CF Foundation  – WI Chapter Advocacy team. Looking at the map of WI, we technically live in Calumet county so we fall into the 6th District and I have volunteered to be the chair for our district.

Today we had a conference call that outlined what would be expected to be the district Advocacy Chair for the district and the support we would have from the CF Foundation. So, after 30 minutes of discussing of the experiences I’ve had on the HR side for FVSHRM and what the state is looking for as far as time commitment and expectations, it was a match for us to take this on. Yup, Nick is along for the ride on this adventure too. As it stands for today, the emails have been sent out to Grothman’s office that we are requesting a meeting at his office in Fond du Lac to introduce ourselves and share our story so far of Maddox. I have an extra Team Maddox T shirt that I think might make it’s way down with us to his office.

As I discussed in one of my other blog posts, education and communication are ways that I feel that I can do to help with finding a cure. What a better avenue than the individuals that can control the bills and regulations that rule our world. I will have a ton more posts about what this journey looks like and what this stage can and might look like for Team Maddox, the CF Foundation and all CF’ers in District 6, however many that is.

My goal is that the legal team in the office will remember Maddox, will know what CF is and keep him in mind while they are lobbying for different bills and regulations. I would love to be able to speak to the team on the lobbying floor to tell our story, share stories of other CF’ers and share why the funding for research is important and all the hurdles Maddox will have when he gets older, like getting life insurance to protect his future family, being able to have a family at lower costs, being able to have medical insurance to help him keep up on the medication he needs to stay healthy, supporting the medical research in the state and being a leaders for others around the country and world.

It seems like a nerve racking adventure but that adrenaline is what is going to make it fun. I am excited to build my network and to push myself outside of my normal comfort zones and try something completely new. I’m excited our meeting we have requested for the latter part of August. Stay tuned for more updates as they come across.




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