Please help us find a cure.
Please consider supporting Team Amanda May in the fight to find a cure for Cystic Fibrosis!
This will be our 16th year participating in Great Strides to fundraise for the CF Foundation. We took last year off which was a challenging year for so many and this year we will be walking virtually on May 30th.
These are scary times, especially for those with underlying health conditions. We are happy to report that Amanda remained healthy (while isolated) during the pandemic. Wearing a mask and staying 6 feet apart is familiar territory for those with CF and standard practice in hospitals and around others with CF since people with CF can share deadly germs.
Amanda has had a very good year since she started an exciting a new medication called Trikafta in January of 2020. Her lung function improved immediately after starting the medication and she is currently participating in a study looking at the potential of decreasing some of the normal daily therapies that Amanda and others with CF do on a daily basis.
What you see in Amanda is a "healthy" and active girl doing normal teenager things (now driving!!). What you don't see are the hours each day that she spends doing therapy to keep her lungs clean (2-3 hours daily) multiple pills (around 30 daily), nebulizers (2-3 daily) and inhalers needed just to maintain her health. Please see Amanda’s recent article in her school newsletter regarding a connection she made during a Career Day event at her school and a visit to Vertex, the pharmaceutical company that developed Trikafta: https://greenwavegazette.org/20350/uncategorized/an-unexpected-outcome-from-a-career-day/#
The various medications she takes would not be available without the CF Foundation and your support as CF research receives no government funding. The life expectancy of people with CF continues to increase and we are very hopeful for the future.
Sadly, we continue to lose precious lives to CF every day and we see heartbreaking posts on our online support groups of those taken too soon. That's why your help is needed now more than ever to ensure that a cure is found sooner - rather than later. To learn more about CF and the CF Foundation, visit www.cff.org.
Cystic fibrosis (CF) is a devastating genetic disease that affects tens of thousands of children and young adults in the United States. There are approximately 30,000 Americans living with cystic fibrosis and Amanda is one of them.
Your generous gift will be used efficiently and effectively, as 97 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, care and education. Your gift is 100-percent tax deductible and will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress.
Together, we can make a difference in the lives of those with CF! Please consider making a donation in any amount. Your support will help us to "add tomorrow" for Amanda and others with CF.
Thank you for your support and for many of you, for your continued support each year. We are truly thankful for your generosity!
Sincerely,
Cindy, Sean, Amanda and Zachary
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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.