Advocacy and Public Policy

Greater NY Chapter Teens Walk the Hills of Congress

This year’s fifth annual Cystic Fibrosis Foundation’s Teen Advocacy Day, held from June 26-28, was the largest and most successful to date.  Among the nearly 60 teens and their families, the four teens from New York (Russell Kielawe, Sean Sondermann, Theresa Phoenix and Danielle Stackrow), Greater NY State Advocacy Chair Melissa Shiffman and GNY Board of Director Kate Niehaus met with their members of Congress and the Senate on behalf of their relatives who have cystic fibrosis.

Advocates held over 220 meetings throughout the day with elected officials from 37 states to tell personal stories about CF and discuss the importance of funding for CF research and drug development, as well as the critical need for affordable access to high-quality, specialized CF care.

Advocates from New York met with the following congressional offices during Teen Advocacy Day:

Pictured (left to right): Russell Kielawe, Sean Sondermann,
Leigh Gartner (Fellow in Sen. Gillibrand’s office),
Theresa Phoenix & Danielle Stack

Sen. Kirsten Gillibrand (D-NY)
Rep. Timothy H. Bishop (D-NY-1)
Rep. Peter T. King (R-NY-2)
Rep. Steve Israel (D-NY-3)
Rep. Carolyn McCarthy (D-NY-4)
Rep. Gregory W. Meeks (D-NY-5)
Rep. Nydia M. Velazquez (D-NY-7)
Rep. Michael G. Grimm (R-NY-11)
Rep. Carolyn B. Maloney (D-NY-12)
Rep. Jose E. Serrano (D-NY-15)
Rep. Nita M. Lowey (D-NY-17)
Rep. Sean Patrick Maloney (D-NY-18)
Rep. Chris Gibson (R-NY-19)
Rep. Paul Tonko (D-NY-20)
Rep. Bill Owens (D-NY-21)
Rep. Richard Hanna (R-NY-22)
Rep. Tom Reed (R-NY-23)
Rep. Chris Collins (R-NY-27)

Pictured (left to right): Kate Niehaus, Trina Fontaine,
Rep. Nydia Velazques (7th Congressional District),
Theresa Phoenix & Elizabeth Phoenix

Advocates shared their personal stories of having a loved one deal with the difficulties of living with cystic fibrosis and asked the representatives to protect the budgets of the National Institutes of Health (NIH) and Food and Drug Administration (FDA), two institutions vital to the Foundation's drug discovery efforts.  The representatives were also asked to ensure affordable access to quality, specialized cystic fibrosis care and to join the Congressional Cystic Fibrosis Caucus if they were not already members.


If you would like to learn more and/or get involved, please contact Melissa Shiffman at cffgnyadvocacy@gmail.com or Trina Fontaine at kfontaine@cff.org.  You can also visit www.cff.org/GetInvolved/Advocate to sign up to receive public policy alerts.