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.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.