Covid 19 will not stop us. On Sunday, June 5th the CF Foundation will hold a national virtual Great Strides walk to celebrate the it’s 65th anniversary. As you know, our 32 year-old son, Bobby faces a daily battle against this deadly disease. Cystic Fibrosis is a chronic, progressive, genetic disease which affects the pulmonary and gastrointestinal systems. 2019 was a ground breaking year for CF. On October 21 the FDA approved Vertex’s Trikafta an oral disease modifying triple modulator therapy that benefits 90% of CF patients with certain mutations. Bobby has experienced disease progression over the last couple of years but since he started the new meds on Nov. 21st his lung function has climbed 14 points from baseline, he has gained 22 pounds, has now cleared the thick mucous in his lungs, has stopped coughing, has more energy. He comments that “this is the best he has felt since college”. We are so grateful to everybody. 31 years of walkathons has yielded this medical miracle. Although this drug is not a cure it corrects the basic cell defect by creating a more normal condition in CF lung cells and other organs such as the pancreas. What this drug can’t do is reverse the historical lung tissue damage caused by the chronic and intractable infections and cycles of inflammation that are the hallmark of CF Our work is not done.The CFF has committed $100 million to infection research a bold initiative committed to reducing infections amd pulmonary exacerbations. We need to develop new anti-inflammatory drugs, new anti-invectives(i.e traditional new classes of antibiotics & other approaches such as nitric oxide and potential phage therapies) to attack these Multi-Drug Resistant(MDR) pathogens that colonize the CF lungs. As an example Bobby now cultures a difficult to treat, difficult to eradicate pathogen within the NTM family(Non tuberculosis Mycobacteria) called m Abscessus. https://www.cff.org/Life-With-CF/Daily-Life/Germs-and-Staying-Healthy/What-Are-Germs/Nontuberculous-Mycobacteria/. NTM has become a co-morbidy for over 13% of CF patients who are now aging into adulthood. The Infection Research Initiative will take a broad approach to advance drug development into all CF-related micro organisms including NTM disease in CF patients. https://www.cff.org/News/News-Archive/2019/Foundation-Awards-Up-to-5-1-Million-for-NTM-Drug-Discovery-and-Development/ Your continued support during these tough economic times is urgently needed to complete our mission to successfully defeat CF, our nation #1 genetic killer of children and young adults. Please join our team by donating on line.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.