Through your generosity, Families and Friends Supporting Cystic Fibrosis Care continues to fulfill its mission of fostering and supporting programs that encourage physical therapy and exercise. CF Care once again provided major funding in support of Lenox Hill’s CF Exercise and Wellness Program, including the inpatient chest physical therapy program.
CF Care also funds unique educational opportunities to learn about CF through personal experience. Through our Internship Program, CF Care has provided opportunities for students to become inspired to pursue a career in the care of people with cystic fibrosis. The CF Center was honored to host five outstanding CF Interns: Mia Schiff, Veronica McCarthy, Emily Plachta, Stella Haralambou, and Neo Haralambou. Mia was instrumental in developing a protocol and obtaining regulatory approval for a joint Lenox Hill and New York State Department of Health quality improvement project for CF newborn screening. Veronica served as a research intern and learned how pivotal trials are conducted in a major institution – these skills are essential for her future goal of becoming a physician’s assistant. Emily launched a project investigating possible health care disparities in CF with a particular focus on evaluating equity in research. She is also assessing the impact of Covid-19 on our CF patients. Stella worked with Dr. Inga Peter at Mount Sinai Hospital, researching polygenic risk scores between inflammatory bowel disease and Parkinson’s disease. Neo created and updated the CF Care Instagram account and designed the invitations for the upcoming gala.
CF Care continues to support vital research infrastructure at Lenox Hill in pursuit of innovative therapies that improve the well-being of people with CF. Funding for the Project Analyst position, as envisioned by the late Dr. Carolyn Denning, ensures that the Center’s pipeline of research studies remains robust, and critical research data is collected and transmitted with skill and integrity. The FDA announced its approval of TRIKAFTA, a new, highly effective CFTR modulator therapy that treats the underlying cause of CF. TRIKAFTA was approved for people 12 and older who have at least one F508del mutation. The approval of TRIKAFTA means that more than 90 percent of people with CF could eventually have a highly effective treatment for the underlying cause of their disease. This milestone is the result of an extraordinary community working together against great odds, and we are overjoyed that this will mean more people will have effective treatments for their disease and better health and longer life may result. Just over 50 years ago, CF was a story of no research and no treatments; today, it is one of the most amazing stories in medicine.
The Board of CF Care serves as the Patient and Family Advisory committee for the Cystic Fibrosis Center. The clinical team seeks input and consultation on a variety of issues from the physical plant, to the quality of comfort provided during inpatient stays at Lenox Hill, to support for patient education such as the Center’s newsletter.
As we celebrate today, I know all of us will not lose sight of the many individuals in our community who are still waiting for a breakthrough that will treat their mutations. We will not be done until every person with CF is treatment for the underlying cause of their disease and, one day, a cure. All of you along with our honorees will help our mission succeed.
Thank you for your continued support!