by Guest Author | May 15, 2024 | Advocating for CF
The Bonnell Foundation is working to raise awareness about the concerns over the Prescription Drug Affordability Board. This would harm research and development. As of today (May 9th, 2024) it has passed the Senate and is before the House. Without amendments made to...
by Guest Author | May 13, 2024 | Podcasts
Approximately 10 percent of the CF population is waiting for a CF modulator drug that will help them by correcting the underlying condition of their disease. Current modulator drugs help more common CF mutations. Emily Kramer Golinkoff is one of the people who...
by Guest Author | Mar 25, 2024 | Podcasts
Maureen Electa Monte and I go … way back! When she was an engineer and doing photography, she photographed our first Portraits of cystic fibrosis black and white calendar in 2003. The wives of the Detroit Tigers, pretty much all of them pregnant, played in our...
by Guest Author | Mar 19, 2024 | Speaking
The Ohio Valley CF Consortium unites scientists (clinical and basic research) together from CF Clinics in Michigan, Ohio, Pennsylvania, Indiana, Kentucky and West Virginia. There is an exchange of ideas, and so much always comes from this conference. This year The...
by Guest Author | Mar 18, 2024 | Podcasts
Aliyah Novelli was diagnosed with cystic fibrosis as an infant. Today, she’s a licensed social worker practicing as a child and family therapist at The Center for Change and Growth in Ardmore, PA. Aliyah is full of enthusiasm about her new program: mindfulness....