My Great Strides Story
For those of you who don't know, I was diagnosed with Cystic Fibrosis at 6 months old. Cystic fibrosis affects the lungs, pancreas, and other organs. The symptoms can vary from person to person, and as people with CF live longer than ever before, their disease can become more complicated, leading to serious health issues. In 2011, I was also diagnosed with Cystic Fibrosis Related Diabetes which is one of the most common complications of CF in adults.
One of the reasons we walk is to raise awareness and money for research for Cystic Fibrosis. One of the medications that has come from this research and fundraising is Trikafta. Trikafta has helped me gain weight and stabilize my lung function. I'm only doing the vest once a day, compared to a couple years ago when it would be 2-3 times a day. I also have not needed IV meds or a hospitalization in more than 4 years which is mind blowing to me. Before Trikafta I would be in the hospital or home with IV's at least a couple times a year.
All this to say, Trikafta is not a cure. There are still mental and physical side effects from taking it, and not everyone has access or is able to take it. Trikafta is also an expensive medication. The yearly cost to take it is $326,000 a year. Luckily my insurance and a co-pay assistance cover most of the cost, but that's not an option for some people.
The CF foundation uses the money raised to help fund new research. Researchers are continuing to find new ways to improve the lives of everyone with CF. Research is important and we need the funds to continue doing it.
There is currently no cure for cystic fibrosis. By participating in Great Strides, I am helping to end this disease for thousands of people impacted by CF. My team's name is Mandy's Dream Team, and if you are interested in walking with me or joining the team to help raise money please let me know!
The Cystic Fibrosis Foundation has made extraordinary progress — including fostering the development of more than a dozen CF treatments — but these treatments are not a cure and not everyone can benefit from them. We must keep going.
Your support makes a difference.
By donating to my fundraising goal, you will help advance our mission for a cure for all. Please consider joining us and helping make CF stand for Cure Found.
Thanks!
Mandy
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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.