On Saturday, May 11, Abby's Army walks again for cystic fibrosis in Huntington Beach!
Abby turned 17 years old at the end of 2023. 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 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 50 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. 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. We were reminded of the power CF has over her in December of last year when she was hospitalized for serious GI issues. And, 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.
We would also love all of our friends and loved ones to join us this year as Abby leads the walk! Please mark your calendars!
Mike, Meghann, Abby and Dom Barloewen
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.