On Saturday, May 14, Abby's Army walks again for cystic fibrosis! It is that time of year again when we ask you to dig into your pockets and help support our fundraising efforts to raise money to help us find a cure for cystic fibrosis.
We know that COVID-19 has made for an insane last couple of years for all of us, yet, the fight against cystic fibrosis for those who suffer marches on. We are excited to say that for the first time since 2019, we will be walking in person again in Huntington Beach.
It’s simply amazing to realize that our daughter Abby is 15 years old. Since she was diagnosed with Cystic Fibrosis one month after birth, we have been fighting to raise funds for the Cystic Fibrosis Foundation to help improve the lives of people with CF like Abby. We are proud that in 15 previous years fundraising for Great Strides, we have raised over $400,000 in total and we ask you to help us add to that total.
We raise money for the Cystic Fibrosis Foundation because it has shown unprecedented success in improving the lives of people with Cystic Fibrosis. In the last 70 years, due primarily to the research and other efforts funded by the Foundation, the life of expectancy for people with CF has increased from 6 to over 45 years of age. The most recent developments are even more exciting. Since December 2019, Abby has been on a medication call Trikafta, which treats CF at the cellular level. We have seen incredible weight gain and a significant increase in lung function almost immediately after starting on the medication. Due to Trikafta, Abby has experienced the healthiest years of her life, not having caught so much as a cold. For someone like Abby, these drugs (while not a cure) offer the possibility of a more normal life not imagined when she was born.
So why must we stride? As wonderful as Trikafta is, it is not a cure. For Abby personally, its lifetime effects are unknown. She is still saddled with an hour a day of breathing treatments. She is still required to take handfuls of pills just to digest her food. She is still required to use a feeding tube at night to take in enough calories to survive. Where we are is not far enough. We need a cure --we continue to stride until it's done for Abby. We are also mindful that there is a significant part of the CF population who can not benefit from the medication that Abby is lucky to enjoy. There is still 10% of the population who has no effective treatment to help correct the basic defect in CF. For those patients, there is no daily medication like Trikafta even on the horizon. The CF Foundation was founded by a group of parents in the 50's because their children were dying before kindergarten, and they refused to accept their fate. Their action has gotten us to where we are today. It's an amazing community that we are blessed and proud to be a part of, and we will leave no one behind. So, we also stride until it's done for our community. Your financial and moral support would mean the world to us. Thank you!
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.