The Timberlakes invite you to join us on Saturday Aug 13th, 2022 in Tulalip, WA for our 6th walk in support of our friend Desi Roney. Thank you for joining us in our fight against cystic fibrosis and sharing in our goal for More Tomorrows for Desi! Together, Team Driving Miss Desi has raised over $200,000 and seen two drugs become available for many of those battling cystic fibrosis! Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short.
Desi lives in Huntsville, AL where she enjoys swimming, riding her bike with training wheels and loving on her babydolls. She is a happy big sister to her little brother Riggs who was born without CF by the grace of God. While she has had ER visits, she has still avoided a hospitalization. Cystic fibrosis is consistently impacting her body even though we do not currently see the impact. Just because she doesn't display more direct symptoms doesn't mean that CF isn't making its mark on her. Cystic fibrosis is quiet and stealthy.
Everyday she takes numerous steps to help reduce its impact and stave off hospital stays.
775- how many pills Desi swallows every month. She takes these before each meal in order to give her body the ability to absorb fat and nutrients from food. She must eat a high calorie diet as putting on weight is a constant challenge and is directly linked to her lung function. 60- how many minutes a day are devoted to breathing treatments. (120 minutes/day when sick.) 60- how many minutes a day are devoted to Airway Clearance Treatments when healthy. (120 minutes/day when sick) To do this she wears a vest and is connected to a machine that will shake her to help move the mucous in her lungs. 47- average life expectancy for someone who has cystic fibrosis (It was 38 when Desi was born- proof that progress is being made!) 8- how many medications and supplements she is on to help her body function. 6- years old, how old Desi currently is ________________________________________
Everyday is a push to help Desi's body operate and to keep her healthy.
Come join us at Great Strides and walk to celebrate how much progress has come about and, through our work together, how much is going to happen!! It is a fun, family-friendly morning spent walking with like-minded friends and encouraging those living with cystic fibrosis and their families. Come join our 'road trip'! Support us by making a donation to our Great Strides fundraising campaigns today and help Drive Miss Desi closer to a CURE!
Ways to Help
To join us at the event: click on the 'Join our Team' button and select 'walker'. From there you can make a donation and/or start your fundraising. Joining our team is free and does not require a donation or fundraising, however, fundraising IS encouraged! The more resources we have for research the better!
Can't attend the movie night but still want to support and donate: Click on the 'Join my Team' button and select 'virtual walker'. You folks are our online force who are driving donations in your community and diligently bringing in money. Once you register you will then be given a link that you can share with friends and family. All donations are tax deductible and many companies match these donations!
Help Share Desi's story: Telling Desi's story is HUGE in educating others that a cure is needed and even better when a face is put with the cause. For ALL walkers and virtual walkers who gather donations from friends, co-workers and family in the amount of $100 or more- you will receive a Great Strides T-shirt!
To Donate: Click on any team members name and your donation will go towards their goal. We gratefully appreciate your donation and your passion for furthering research for Lady D!
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.