When the news of the Trikafta™ approval came out, I was simultaneously excited for people with CF that would benefit and disappointed that another new medicine is passing me by. But, hearing about the next wave of research into a cure for ALL people with CF has me looking forward to the future.
Site Search
When I first learned that my two sons had cystic fibrosis nearly 20 years ago, I barely understood the disease, let alone how to fight back. After contacting the Foundation, I learned just how easy it was to make my voice heard through volunteering.
With another fantastic Volunteer Leadership Conference (VLC) in the books, I want to share some of the things we learned and how we can keep the momentum going through National Volunteer Week, and all year long.
For people with cystic fibrosis, our story is the most powerful tool we have to stand up for ourselves and fight for our needs. Although I can't always be there to share my story with legislators in person, I'll be joining many others from the CF community for our first March on the Hill Online Day of Action to make my voice heard.
Participating in clinical trials can be scary, but the sense of empowerment you get from knowing that you are contributing to a cure outweighs any second thoughts.
Although I wasn't sure that I'd still be thriving and working at the age of 44, I was fortunate enough to have people who encouraged me to plan for the future despite my CF diagnosis. That's why I'm pleased to introduce a new resource available from the Cystic Fibrosis Foundation.
An Impact Grant from the CF Foundation allowed my program, the Mothers' Retreat Program, to provide a space for moms of children with CF to get together and learn new approaches for addressing self-care, anxiety, and depression.
Caring for somebody with CF used to be a lonely journey. But that changed after I attended the first Volunteer Leadership Conference (VLC). I have attended the conference every year, and this year as a co-chair of the 15th VLC, I'm welcoming everybody to livestream it so we can share and learn together.
Three of our Impact Grant awardees tell us how the program has allowed them to make a difference.
Going from being pretty healthy for most of my life to being admitted to the hospital was scary and shocking. I decided to get help by asking for a peer mentor -- someone who also has cystic fibrosis. What I didn't expect was that I'd get amazing support and advice about CF and so much more.