This committee works to inform the CF Foundation of ways to best support patients and families living with cystic fibrosis. The goal is to have build collaborative partnerships between patients and care team for the highest quality personalized disease management.

As the National Advocacy Co-Chair for the Cystic Fibrosis Foundation, I work to further policy and legislation that will support the needs of the cystic fibrosis community, and encourage scientific innovation in the realm of cystic fibrosis treatment.

My son was diagnosed with a genetic disease called cystic fibrosis, just after birth. I learned that the non-profit Cystic Fibrosis Foundation was leading the way in investments to control and cure CF. My mission is to raise money to support the CFF, raise awareness about cystic fibrosis in my community, and protect the rights of patients so that they may enjoy the fullest potential of health and happiness.

As a member of this board, I work with CF clinic staff to enhance communication, between patients and families with the CF care team, and work for institutional policies to support CF care.

I work with elected officials at the State and Federal level to raise awareness about cystic fibrosis, promote scientific progress in treatment, and protect access to the specialized care and drugs required for CF care.