Here we are again! Thanks for visiting our team page to learn our team's story and (hopefully) make a donation! Our team is organized in honor of my amazing little lovey, Hope. Hope is in 1st grade this year at Wildwood Elementary School in Amherst, MA. For someone that never expressed interest in school and would prefer to spend her time sprinkling sunshine willy nilly, the structure of first grade surrounded by actual human beings has been great for her. She loves her friends, her teachers, an is excited about the things she does in school.
Hope wants to grow up to be a modelartistrockstar/bugscientistfarmer. And she probably will. In addition to being a part time diva, she is kind and compassionate, brave and opinionated, and not easily derailed - there's a drummer in her head and music in her soul and she is happiest when dancing along to it. She also is still dancing at Shooting Star Dance Center. Hope is a cuddle bug who brings so much love and joy to our hearts and touches the lives of all who enocunter her. She is truly a force to be reckoned with. She told me just today that if she ever had to come up with a password it would be "joyfulforever" WHAT?! (Please dont hack her future accounts) She blows my mind daily with her positive attitude, her ability to recognize the element of choice involved in such relentless joy, and her commitment to embodying that choice as central to her identity and the energy she WANTS to bring to the universe. I don't know whether living with a chronic illness has somehow played a role in the development of her smile muscles, but the fact that she does live with CF is central to my hope for a cure and participation in Great Strides - the largest annual fundraiser benefitting the CF Foundation.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. Hope is one of them. Every day we, her family and friends, wake up knowing that something besides her amazing light plays a role in what Hope's future - and present - looks like. Something our love cannot fix. Something our guidance, counsel, and cumulative years of wisdom and experience cannot mitigate. Please help us ensure that Cystic Fibrosis - this microscopic piece of Hope's DNA - does not limit her access to opportunites or in any way prevent her from realizing her potential as a powerful force in this world. Healthwise Hope is still doing very well, she was able to start Pulmozyme and Trikafta in August and consistently has PFTs above 100%. Mask wearing has continued to bless us with another winter free of pesky ear and siuns infections and the antibiotics associated with them.
By becoming a member of our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their 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.