President's Message


On behalf of the Cystic Fibrosis Foundation, Greater New York Chapter, I am pleased to introduce to you the inaugural issue of CFForward, our new quarterly e-newsletter.  It will serve as another avenue of communication between the CF Foundation and its supporters – which consists of donors, CF families, medical researchers, fundraisers and everyone who makes up the CF community throughout the New York metro area.

First, thank you for being a partner in our important work.  Your support has a direct and meaningful impact on our ability to work toward curing and controlling cystic fibrosis through the advancement of research.  The success of the CF Foundation can be attributed not only to its excellent staff, but the thousands of volunteers who play significant and supporting roles in furthering its mission of raising awareness and generating the funding necessary
for ongoing medical research to fight CF.

Due to your commitment and hard work, the CF Foundation and our own Greater New York Chapter are having its most successful year in history.  Some of the key milestones and events achieved this year include:

  • January FDA approval of Kalydeco™, 1st drug that targets the underlying cause of CF;
  • March CFF advocates “March on the Hill” to attract support from members of Congress;
  • April Westchester’s Spring Fling raises over $200,000;
  • May & June         10 Great Strides Walks throughout our Chapter territory raises over $3.1 million toward our goal of $3.2 million.  We are confident that by year’s end, we will surpass that goal!
  • June U.S. Senate and House passes EXPERRT Act and is signed into law by President Obama. This law increases patient and expert participation in FDA review of CF and other rare disease drugs;
  • June CVS/pharmacy raises millions of dollars for CF research through an in-store point-of-purchase fundraiser known as Advancing Medical Research.
  • June Final results from Phase 2 combination study of Kalydeco and VX-809 show significant improvement in lung function;
  • July 4 teens from Greater New York attend “Teen Advocacy Day” on Capitol Hill;
  • July The Cystic Fibrosis Foundation unveils a new brand and logo;
  • September Inaugural Cystic Fibrosis Awareness Night with the New York Mets held in support of CF awareness;
  • September The 2nd Annual CF Cycle For Life bike tour brought together CF Foundation supporters and a new demographic to our cause – avid cyclists;
  • October CF Foundation announces pharmacy alliance with Walgreens, which will provide the CF community with greater access to affordable medications and expanded pharmacy services;
  • October Party City expands its support in 2012 with an in-store fundraising campaign during the Halloween season, its busiest time of the year.  From October 7 – 31 at over 600 locations $1 pin-ups were offered to raise funds and CF awareness;
  • October NYC’s YPLC hosts “A Prom to Remember” at The Hudson Terrace with 600 supporters and record- breaking revenue of over $150,000;
  • October 2012 Scientific Update with Dr. Robert Beall, CFF President & CEO and CBS-2’s Katie McGee
  • November 9th Annual Breath of Life Gala raises $1.5 million at Cipriani 42nd Street;
  • November Chef Sue Torres and four celebrity chefs prepared 5-course gourmet meal for guests at our inaugural Grand Chef’s Gala, “Entrée to a Cure,” sure to be an annual event.

As the father of two young teenagers with cystic fibrosis, my effort to assist the CF Foundation with its mission is of the utmost importance to me.  I believe our future success will be determined by continuing to strengthen the bond between the CF Foundation staff and us – the thousands of volunteers who are committed to help raise the funds necessary for advancing research.  We can achieve this by working well together, and in partnership; and that requires good communication, which this edition of CFForward helps to achieve.

But there is much work still to be done.  As we near the end of 2012, we hope you will consider making a year-end contribution to our Partners in Progress Annual Fund.

On behalf of the Board of Directors, I wish to thank you for being a true partner in our important work. Only by working together and by staying committed can we accomplish our common goal of improving the lives of those with cystic fibrosis.


Timothy J. Clark
Board President