Twelve days after my now 6-year-old son was born, my husband Joel and I found ourselves sitting in a small, windowless patient room holding our tiny baby, waiting for the results of his sweat test. When it was time to hear the results, a half-dozen nameless people in white coats crammed into the room and I broke down wailing. After all, that many people don't cram into such a small room to deliver good news. While I remember that day in mostly flashes, one thing was made clear: Yes, there have been amazing advances in cystic fibrosis care and treatment over the last several years, but because my son has two nonsense mutations, we can expect the typical outcomes.
For several days after my son's cystic fibrosis diagnosis, I cried a lot. But then, a couple of weeks later, I snapped him into his carrier, hopped on a Chicago bus, and knocked on the door of the Greater Illinois Chapter, Chicago Office. (It was too soon after his diagnosis for me to fully comprehend just how many germs I was exposing my child to on a city bus.) I sat with the executive director and asked what I could do to make a difference for my son. The obvious answer was fundraising.
As a mom, I want to fix everything for my children. When my children are hungry, I feed them. When they are hurt, I give them kisses and Band-Aids. When they are scared, they get hugs and snuggles and flashlights. But CF is not something I can fix. I'm not a scientist or a doctor. I'm just a mom -- but I still want to fix CF for my son. I don't want him to ever worry about living with this disease, and I don't want his baby sister to ever worry about life without her favorite person in the whole world.
Over the last few years, Joel and I attended numerous fundraising events and led a very successful Great Strides team in Chicago, but it still never felt like enough. So, when I was approached with the opportunity to become the co-chair of the Annual Fund for the Greater Illinois Chapter -- and later to become the national co-chair of the Annual Fund with the amazing Peter Hodge -- I jumped at the chance.
I may not be able to screen compounds for their potential to correct the underlying cause of CF and I may not be able to understand how to use CRISPR to edit genes, but I can talk to people and tell our CF story. And, I can go out and raise money to accelerate research and help the amazingly smart researchers who are working to find a cure for all of our children. I may be just a mom, but I'm in this for the long haul. I will continue to put everything I have into the Annual Fund until the day a cure is found for everyone living with CF.
