Advocacy & Public Policy

Anecdotes from Advocates

From left to right: Megan Sullivan, Maureen Mollahan,
Congresswoman Nita Lowey, Thom Byrne, and Trina Fontaine.

On Thursday, November 12th several Greater New York Chapter volunteers met with Representative Nita Lowey of New York’s 17th District, who has been a long time supporter of the cystic fibrosis community. During the meeting, our volunteers specifically highlighted the importance of supporting access to medicine and care, and increased funding for the National Institute of Health and Food and Drug Administration.

“My daughter, Anna, is three years old and lives with cystic fibrosis. Like other CFers, her days are bookended with treatments to support her health. It is easy to focus on these daily obligations at the expense of the long term responsibilities of being a CF parent, which include promoting policies that advance the goals of the CF community. Often distracted by Capitol Hill politics, it is important to remind our representatives of the impact of their policy decisions.  Sharing Anna’s story personalized the disease, and in turn personalized the policies that the CF community supports in order to fight cystic fibrosis. Representative Lowey was not only receptive to our message, but seemed genuinely concerned about certain policy decisions that may hurt the CF community.

With the continued advocacy efforts of the Cystic Fibrosis Foundation and CF families, we can personalize the disease for policy makers.  Whether they support the policies we promote, they need to know the stories of the people that are impacted by them.”
– Thom Byrne, Father
“Meeting with Nita Lowey was really exciting. I had never been to a politician's office before, and had only been introduced to local county representatives. It was more exciting than unnerving, and I was more than happy to be there. I felt very comfortable, the people in her office were very kind, and you could tell she wanted to give us a fair amount of time. I hoped really just to reach her, that maybe something our group said or did would stick with her, and she would continue to support us. I felt great when I left. It was a really nice experience meeting Nita Lowey and I was very happy she was engaged in what we had to say.”
– Maureen Mollahan, CF Patient

f you are interested in participating in or learning more about advocacy on a state or federal level, please contact Trina Fontaine at kfontaine@cff.org or 914-993-1460.