President's Message


I can’t believe that we are ¾ of the way through 2017 as it has already been a very eventful year not only for those of us in the cystic fibrosis community, but also for anyone who has followed the health care reform debate.

Two proposals have been under consideration in Congress since January that relate to revising the Affordable Care Act. Our CF advocates have been incredibly active and effective in communicating the needs of CF patients for care that is high quality and specialized with no annual or lifetime caps and with no cuts to Medicaid, a program that provides coverage for 50% of children with cystic fibrosis. Calls have been made, letters have been written and visits to legislators’ offices have taken place. We thank all of our advocates for their efforts to date. Clearly there is more work to be done and we hope that our advocacy ranks will grow and strengthen so that we will be up to the task.

In addition, in July our pharma partner, Vertex, announced that it has identified three triple combination corrector candidates, two in completed phase two trials in people with CF who have one F508del mutation and one minimal function mutation, and one that has just completed phase one. One or two of these candidates will be chosen for a phase three trial, probably in early 2018. All three candidates showed meaningful clinical benefits and all exceeded the company’s expectations for the trials not only in this hard to treat group with only one F508del mutation, but also in the homozygous F508del patients. Whichever candidate moves to phase three clinical trials is expected to provide substantial benefit to more than 90% of the CF community. This is exciting news, but I remind you that the CFF will not rest until 100% of our population has the cure that they need. No patient will be left behind.

So much work is being done by the Foundation to develop modulator therapies, but I would be remiss if I didn’t note that the needs of people with CF later in their journey, as they approach the possibility of needing a lung transplant, are not being ignored. The CFF recently named Dr. Albert Faro as the Senior Director of Clinical Affairs. He devotes much of his time to our lung transplant, palliative care and quality improvement initiatives. On Wednesday, September 13th from 5:45 to 8:30 p.m. Dr. Faro will be the keynote speaker at our annual Scientific Update event. We invite you all to join us for what promises to be an informative evening.

The North American Cystic Fibrosis Conference is taking place November 2-4 in Indianapolis. This conference brings together 4,000+ attendees - scientists, clinicians, and caregivers-all working to transform care for CF patients. An inspiring gathering and I plan to be there hearing about all the new developments.

In other board news, our committees are hard at work on our fall events including our Breath of Life Gala, our endurance events, Cycle for Life and CF Climb, the Rose to Runway Fashion Show, several golf events, and the Young Professionals Cocktails for a Cure. In addition, board members are working to identify corporate sponsors for our events and develop individual giving practices in our community. And, as always, our dedicated staff is working overtime to make all these events happen. So many thanks to Martine and her crew!

I hope to see you in the fall!


Kate S. Niehaus
President, Board of Directors

On the Cover

Pictured on the cover of this issue is Jennifer Koke and her youngest daughter at the Westhampton/Riverhead Great Strides Walk this past June. Their team, Cure for Cammy, is comprised of family and friends who walk in honor of Camryn Koke (pictured right), Jennifer’s eldest daughter.

This year the team has already raised over $14,000! Cammy also spoke at the walk, specifically emphasizing on how important donations are in the fight for a cure for cystic fibrosis.