Advocacy & Public Policy

New York State Advocacy Day

Our Second Annual Cystic Fibrosis Advocacy Day in New York State took place on Tuesday, February 2nd. The Greater New York chapter made up 11 of the 21 participants, which consisted of volunteers, chapter staff, and care center clinicians. Board members Matt Genova, Dr. Germana, and Kate Niehaus, in addition to Lynn Bonitz (Northwell Health), Dayna Blackmon, Gillian Bonanno, Margarete Cassalina and national advocacy co-chair Melissa Shiffman represented our chapter.

The group met with 33 state lawmakers including the Chair of the New York Assembly Health Committee, Representative Richard Gottfried (D). Advocates shared their personal CF stories, highlighted the needs of people with CF and asked legislators to protect key health programs that help ensure access to high-quality, specialized care. Legislators were also asked to support Governor Andrew Cuomo's proposed executive budget, which fully funds the Adult program and Medicaid. These two programs are key components of care for people with cystic fibrosis and help people with CF to better afford their prescription medications and high-quality care.

March on the Hill

February 25th marked the tenth anniversary of the Cystic Fibrosis Foundation's signature advocacy event, March on the Hill. Led by our own Melissa Shiffman, National Advocacy Co-Chair, nearly 75 advocates came together in Washington, D.C. to meet with their elected officials. Volunteers representing 34 states attended approximately 200 meetings throughout the day to speak with members of Congress and their staff about policies that impact the cystic fibrosis community. Specifically, they highlighted the ways that elected officials can help advance treatments and improve the quality of life for people with the disease by supporting greater funding for the National Institutes of Health and the Food and Drug Administration. Both agencies play a crucial role in the development of new, specialized treatments and therapies for people with cystic fibrosis.

Teen Advocacy Day

Five teens from the Greater New York Chapter attended Teen Advocacy Day in Washington, D.C. on Thursday, June 23, 2016. They joined over 70 other young adults from across the country to advocate on behalf of family and friends with cystic fibrosis.

Thank you to our Greater New York Chapter advocates - Andrew Bigelow, Juliana Brogan, Max Genova, Matt Grotta, and Stephanie Ross!

We are looking forward to successful events in 2017!

  • NY State Advocacy Day ~ January 30th
  • March on the Hill ~ March 1st - 3rd
  • Teen Advocacy Day ~ Summer Date TBD

If you are interested in getting involved with our advocacy efforts, please contact Trina Fontaine or Jillian Tucker at 914.993.1460.