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
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should 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 only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by 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.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.