In the first few months after Major's cystic fibrosis diagnosis, I knew I wanted to do everything that I could to help find a cure. But I didn't know what that would look like.
As a long-time writer, I started a blog to share my journey of early motherhood. This gave me an outlet and helped me form a community of moms to support one another. Fundraising was my next project, and much to my delight, I have continued to find great generosity in the depths of people's hearts. As I was exposed to more and more ways to get involved with the Cystic Fibrosis Foundation, I found myself the state advocacy chair for Iowa. It was there that I truly found my passion.
This past February, I was selected by my chapter to attend the CF Foundation's 10th annual March on the Hill. Advocates from all across the country brought their stories of loved ones battling CF to their congressional leaders. We were all educated on the current policy initiatives affecting people with CF today, and entered our meetings prepped and ready to go.
One of the tasks we were given was to ask our representatives to join the Congressional Cystic Fibrosis Caucus. There was no Senate CF caucus, so there was no need to ask senators to join. After a great first meeting with Senator Chuck Grassley's health policy director, Karen, where I shared my personal story of raising a 2-year-old with CF, I wrapped it up by asking if Sen. Grassley would please join our caucus.
Insert foot in mouth. My husband and one of my CF momma friends who were with me both looked at me like I had two heads. I'd like to chalk it up to jet lag -- but I was mortified! They quickly scrambled to remind me that there was no Senate CF Caucus for Sen. Grassley to join. But then Karen surprised us all. She asked, “Why don't we have one?” And with that, the new Senate CF Caucus started to take shape.
Upon our return to Iowa, I immediately got on the horn with Sen. Grassley's office and the CF Foundation to follow up on that fateful conversation with Karen. The Foundation's wonderful advocacy team quickly mobilized and worked hard to build upon the initial interest expressed by Sen. Grassley's staff. As luck would have it, Senator Edward Markey, who co-founded the Congressional CF Caucus back when he was a representative, was ready to support the caucus and sign on as a co-founder alongside Sen. Grassley.
The formation of the caucus was a wonderful whirlwind.
Now listen, I know that we don't get everything we ask for in life, but I always say that the worst thing someone can say is “no.” When I followed up with Sen. Grassley's office, I knew that might be his response, but I also knew that it could be the beginning of a conversation toward something else in the future and also the beginning of a new relationship between the CF community and a long-time member of Congress.
Since the caucus was formed, I have had the opportunity to meet Sen. Grassley. He was so gracious and happy to become a part of our fight. He even attended our Great Strides walk in Iowa on May 21 and spoke about his pledge to be an advocate and supporter for all those living with CF and their families.
So, take my word for it: even “dumb” questions can be the questions that get something done.