This is the 8th year that we have been participating in the Great Strides walk for the Cystic Fibrosis. The walk will take place this year on Sunday, May 19th at the Wompatuck State Park. We walk for all the people living and fighting daily with CF, but especially for our team chair, Kaylee. Kaylee is a vibrant 8.5-year old girl who was born with Cystic Fibrosis (specifically two copies of df508). Those of us who know her, know that she does not let anything get in her way. She is on a strict regimen of medications/vitamins, nebulizers, chest PT/airway clearance all to help keep up her lung function, and she also has a G-Tube as well to help her maintain her weight. She has an amazing spirit and full of spunk!
With all the research dollars raised there have been huge developments over the past decade with drug treatment. Kaylee was able to be put on one of these, Orkambi, and has thrived. With this drug therapy along with her daily routine of nebs and chest PT (80 mins a day) her lung function has increased 10%!! She has also gained in a year almost 10 pounds, this is great as there is correlation to BMI/Weight and lung function. Vertex has again been FDA approved for the new CF drug Symdeko which has been able to help even more of those living with CF. This currently is available for 11+ with the DD508. The talk is that this is going to be even better then Orkambi for most CF'ers, which is exciting news! This past November Vertex relseased information on two Phase 3 Studies of the Triple Combination of VX-659, Tezacaftor and Ivacaftor Met Primary Endpoint of Improvement in Lung Function (ppFEV1) in People with Cystic Fibrosis with positive results.
Cystic fibrosis (CF) is a devastating genetic disease that affects tens of thousands of children and young adults in the United States and it substantially impairs normal respiratory & digestive functions, making the simple act of breathing and eating a challenge.There is currently no cure for CF and the median life expectancy when Kaylee was born in 2010 was 37 years old. This number is far too young, and quite frankly, the majority of people losing their battles daily are much younger. Research is getting closer to finding the answer thanks to all of your donations. Last year I mentioned a Phase 3 clinical trials, I am happy to announce that it has been FDA approved (Symdeko) for CF patients 12+! This is such great news, as Symdeko showed better clinical outcomes in the trials.
The CFF gets no federal funding and the research is funded by your donations!!
Help us reach our fundraising goal by donating to our Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible. Please go to http://fightcf.cff.org/goto/teamk
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.