March on the Hill brings a mix of new and familiar faces to Capitol Hill every year. The connections and stories that our advocates share with their elected officials are making lasting impressions that impact the entire CF community. And as this event has grown, so too has the cystic fibrosis story.
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Last month, Senator Chuck Grassley (R-Iowa) and I partnered to create the Cystic Fibrosis Caucus in the U.S. Senate. We are working toward a day when CF stands for “Cured Forever.”
A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.
Sr. Vice President for Policy and Community Affairs Mary Dwight reflects on the passage of the Ensuring Access to Clinical Trials Act (EACT) and what it means for the community.
I’ve learned that paying too much attention to the idealized lives of people on social media can give me a skewed vision of my own.
At age 5, my daughter started to feel the traumatic emotional effects of cystic fibrosis. Fortunately, the care center’s social worker helped her find a healthy path through it.
I wish people knew that even if I don’t look sick, I still struggle with the mental and physical aspects of cystic fibrosis. Even my family and friends don’t truly understand what this disease does to your mental health.
As a mother with cystic fibrosis, I have learned to prioritize my mental and physical health in order to stay healthy for my two young daughters. I have invited them to come alongside me on my journey as we cherish the little moments in our lives.
Art has been my therapy throughout my life, but it took on new meaning when I had a daughter with cystic fibrosis. Now creating artwork helps carry me through the stress of CF life.
Having cystic fibrosis has been a double-edged sword. CF has caused suffering, but it also has given me the perspective to embrace my life.