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
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.