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In memory of Annie McMahon, my family & friends will be participating in the 20-mile Cycle for Life ride for CF on Oct 5th in Peekskill to raise money for the CF Foundation. Cystic Fibrosis stole Annie's last breath on July 25, 2019. We want to honor Annie by continuing to raise awareness and money to end this dreadful disease.
As many of you know, we have been big advocates for the CF Foundation over the last 20 years. What you may not know is Annie and her family inspired us to do Freezin’ for a Reason, Jump in the Lake Cure CF in the first place. I remember chatting with Theresa on the phone and her sharing with me that Annie was in the hospital for her first 2-week IV Tune Up. This scared me to the core. That day, Freezin’ for a Reason, Jump in the Lake Mahopac was born. The McMahon family and friends plunged in the Rockaway beaches to raise money to cure CF. So the Stack family and friends would Jump in the Lake.
Please consider making a donation. I will be grateful for anything you can do. I promise the CFF works very hard to fix our children. Research is everything, so please help.
Just in case you forgot what Cystic Fibrosis is, here are some facts that have affected my family.
Cystic Fibrosis is a genetic disease that destroys all your organs and steals your breath away. There are approximately 32,500 people in the US with CF. The CF Foundation does not receive any money from the government.
March 22, 2001 - Jacqueline diagnosed at 8 months old with CF. Sweat Test indicated 99 (below 40 is no CF). (NO DRUGS in pipeline to fix the CF protein)
2010: The FDA approves a new inhaled antibiotic to treat CF lung infections. This new therapy is a much-needed alternative to antibiotics for CF patients who battle recurrent infections and develop resistance to existing antibiotics.
January 2012: The FDA approves ivacaftor (Kalydeco®) for a small group of people with CF ages 6 and older. The drug is the first to address the underlying cause of CF and opens exciting new doors to research and development that may lead to a cure for all people living with the disease. Kalydeco a drug that treats the underlying genetic defect in CF. Only 4% of CF patients are eligible to take it. JACQUELINE IS ONE OF THE 4%!!!
March 12, 2012 - Jacqueline takes her first dose of Kalydeco. (This is after a difficult winter as Jacqueline was on a number of antibiotics the entire winter season)
May 7, 2012 - Jacqueline takes a Sweat Test after 2 months of Kalydeco. Test indicates 39. Lung function is back up into the 100 range.
2014: The FDA approves ivacaftor as a single therapy to treat people ages 6 and older with one of eight rare CF mutations in addition to G551D.
2015: The FDA approves the lumacaftor/ivacaftor (Orkambi®) combination drug for people ages 12 and older who have two copies of the most common CF mutation, F508del -- representing about a third of those with CF in the United States.
2016: The FDA approves the lumacaftor/ivacaftor for children with CF ages 6 to 11 who have two copies of the F508del mutation. The decision means that about 2,400 additional children in the U.S. are eligible to receive the drug, bringing the total number of those eligible for the treatment in the U.S. to nearly 11,000.
July 22, 2019: Vertex (the manufacturer) announced that it has submitted a New Drug Application to the FDA for the approval of its triple-combination therapy. Vertex confirmed it is seeking priority review, which, if granted by the FDA, would shorten the regulatory review to eight months from the time of submission versus the standard review time of one year. This approval will increase those eligible for a therapy that treats the underlying genetic defect to 90%.
July 25, 2019 - We are still losing our 22-year olds to CF.
Today - The CF Foundation still needs our help with the remaining 10% of patients that need help to correct the CF protein and ultimately to find a cure.
Please help me make a difference for those children and young adults that are still struggling with this disease that steals their breath away.