President's Message


I am very excited to welcome you to our fourth issue of CFForward. The first half of 2014 has proven to be a time of progress, self-evaluation, and above all, great hope for the CF Foundation.

In April, the Volunteer Leadership Conference (VLC) took place in Bethesda, Maryland. The Greater New York Chapter was well-represented at the conference—I would like to especially thank Robert Corti, Kate Niehaus, Marc and Margarete Cassalina, and of course Martine Denis, Teresa Gaudio, and Trina Fontaine, for attending.

It was announced at VLC that after a year of hard work from staff and volunteers, a new mission statement and strategic plan were both released from the CF Foundation. As per the National Office, here is Cystic Fibrosis Foundation’s new mission statement:

The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality, specialized care.

The Foundation’s strategic plan consists of six important focus areas: pipeline & research, adherence, access & quality of care, communications, revenue, and CF adult task force. The CFF’s Drug Pipeline will continue to be a heavy focus, and the new strategic plan outlines goals to develop nonsense mutation therapies to treat most of remaining untreated patients, and work to repair the mutated CFTR gene, among many other pipeline objectives.

The strategic plan also outlines ways to measure and study adherence in the CF population, which will culminate in a “multi-channel communications campaign to raise awareness about the importance of adherence among people with CF, their families and care centers.”  Care center standards will also be evaluated and enhanced in order to ensure the highest quality of care for CF patients. A large factor in enhanced quality of care also includes developing a resource, program, and service network to ensure people with CF,  their families, and care centers have access to the most up-to-date and high-quality information and services.

CF adults also play a large role in the Foundation’s new strategic plan. Per the plan, a permanent Advisory Council will be established, comprised exclusively of CF adults. The Foundation also plans to address the needs of CF adults in mental health, care center relations, personal mentoring, and therapeutic counseling in a way that has never been done before.

The Foundation is very eager to begin implementing this new plan which will supply enormous value to this organization! It is exciting to watch as these new plans unfold!

I wish everyone a happy and warm spring season!


John A. McKenna, Jr.
President, Board of Directors