What can you do to help?

Small acts, when multiplied by millions of people, can transform the world- Howard Zinn. I was asked to provide insight into how can our community members can get involved to help CF. My questions back to everyone are; where is your passion, what are your strengths, or what do you like to do that brings…

Mental Health Stigma

I’m not gonna lie, the month of May has definitely been a roller coaster of emotions, stress, fun, weather, and everything in between. I had all the best intentions to have more posts of CF and everything that is going on, where we are, CF advocacy and everything in between. And then my appendix decided…

Parent – Teacher Conferences

Yep! You read that right! Our little man had Parent Teacher conferences this week. Nick’s first thought is what are they going to chat about? He’s 3. Well, we were pleasantly surprised on how much we could talk about. It was pretty cool to see how much he has grown and what we can work…

CF is Gaining Momentum

It’s amazing that in just 3.5 years ago, I really didn’t know anything about CF. I heard of it in passing, couldn’t pronounce the name and didn’t know anyone with it. Now, when something is handed to you as a challenge, you jump in all hands on deck to learn everything about it. Now that…

The Story of 65 Roses

As I was surfing on the CF Foundation page for information to share with everyone, I came across this story which I thought was really interesting. Enjoy! The “65 Roses” story dates back to 1965 when an observant 4-year-old, hearing the name of his disease for the first time, pronounced cystic fibrosis as “65 Roses.”…

The Future of CF

The CF Foundation website has a ton of information that I would love to share on this post as there is just so much in the pipeline. Here is research update from the foundation along with updates with Maddox specifically. When a group of parents started the Cystic Fibrosis Foundation in 1955, there were no…

Understanding CF Diagnosis

Diagnosis and Genetics – Cystic fibrosis is a genetic disease. People with CF have inherited two copies of the defective CF gene — one copy from each parent. Both parents must have at least one copy of the defective gene. People with only one copy of the defective CF gene are called carriers, but they do…

Cystic Fibrosis Basics

If you are an individual that likes the why and how of something, tune in. The next series of blog posts are to help everyone understand what Maddox has, how it impacts him and what the future looks like right now. Don’t worry, I have a ton of Maddox pictures to help break up the…

May is CF Awareness Month

The month of May is CF Awareness Month! Throughout the month, I will have a few posts to refresh the basics of what CF is, walk through the future of CF and understand where 65 roses came from. Don’t forget that May 18th is the Great Strides walk in Appleton where money raised will go…

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…