Hello friends!
I thought I share Ella's words for my request to Cystic Fibrosis letter.
"Cystic fibrosis is a devastating genetic disease that makes it difficult to breathe and sadly shortens lives. In the United States alone, it affects approximately 30,000 children and adults, I AM ONE OF THEM. In response, the CF Foundation continues to lead the way by accelerating new therapies and providing support to meet the needs of those with CF. They are committed to exploring all science that has real potential to deliver a cure. While the new therapies help most people with CF feel better and limit the progression of Cystic Fibrosis, I, unfortunately still do not qualify to take these new medications. That's why we still need your help and support, so that those of us who don't qualify for these new medications eventually can.
Every day I take more pills than a teenager should have to. Everyday an hour of my life is reserved to focusing on my lung health and doing treatments. With school, soccer, and other extra curriculars, it is challenging to keep up with my treatments and medications. I have recently made the decision to take a break from travel soccer, because I have had a hard time being able to fit my sickness into my schedule during the new school year. Soccer has become harder for me to participate in over the years. It's challenging trying keep up with my teammates most of the time. I have had some not so helpful and understanding coaches, but most of my coaches have been amazing. It wasn’t until my freshman year that I got my first bad lung infection. That was a HUGE realization for me that my disease was very much real. Before then I had been healthy as if I was normal, besides having to do treatments every day. In my mind, doing treatments every day was something that was somewhat normal, as if everyone had to do it. When I realized my disease was a big deal and my health was not normal and doing treatments like I do is not normal, I started to deny the fact that I needed any of my medications. I would go days or even weeks without taking care of my health because I denied the fact that I am sick. Doing these fundraisers and events allow me to meet so many people and children that are going through the same thing. I have talked to other girls all over the country with Cystic Fibrosis. I struggle to be able to get my treatments done every day even now. Luckily, I have amazing friends and family that help me to get through it.
This year, I'm participating again in our “Ella’s Express Walk"(as my mom has called it over the past 15 years) to advance the Foundation’s mission (and my mission) and I need your help to meet my fundraising goal. Every dollar counts! The Great Strides Walk is on September 30th on Siesta Key Beach, but it’s never too late to donate.
Making a donation is easy and secure – and each gift is 100 percent tax deductible. Just click the "Click to Donate" button on this page to make a donation that will support my team, Ella’s Express. Any amount you can donate is greatly appreciated. Your support will help change lives. It will help change my life and already has!
Your donation and the CF Foundations mission to find a cure will help speed the progress.
Together, we will make CF stand for Cure Found.
Sincerely (and gratefully),
Ella"
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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.