As some of you know, I am a CF Grandmother and long time supporter of Great Strides. Our granddaughter, Ellis Rose, was diagnosed with CF at the age of 7 days old when her infant blood test screening came back positive for CF. After the shock and pain of the diagnosis, our family made a conscious effort to accept the diagnosis and look to the future with optimism and joy. Since those first days, many things have changed in the world of CF.
A new drug, Kalydeco, is currently on the market for CF patients with a specific gene, G551D. Ellis is one of those people. She participated in a trial study for children ages 2-5 year olds. Since then, the drug has been approved by the FDA and Ellis has been taking it daily. Her lung function is higher and her need for other treatments has lowered.
Ellis has a bright future aheas of her but many of our friends and fellow Cf community members are still fighting the fight. Our community is a big family of caring and supportive people and together we will find a cure for CF!
We are very blessed to have such a wonderful support group and such wonderful friends and family who show up for events, take time to check in, and share their love with us.
Thank you for being that support.
Please help me reach my fundraising goal by donating to Team Ellis Rose. 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. Truly, the CF Foundation is the best at dedicating funds to the right places and we know that a cure is soon to be found.
With love always,
Karen, Kelly and all of the Callan, Anderson, and Quesada families
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.