Lots of the people I interact with for my job, as the Program Coordinator for the CFLF, (especially people applying for, or receiving a grant) are shocked to find out that I, too, have Cystic Fibrosis. When I tell someone that I have CF there is a certain understanding felt between us, because they know that I “get it.” 

What I don’t usually tell them is that I was also once a CFLF grant applicant and then a Grant Recipient. It’s not because I don’t want them to know, but it just doesn’t typically come up. I understand exactly how much time and effort goes into filling out the paperwork and then how excruciating the wait is to hear if you were approved or not. I also know how imperative the need to be approved can feel and how life changing it is when you actually get approved.

Although I had always been active in sports growing up and into high school, in college those opportunities were harder (and more expensive to find). After college I learned about the CFLF from my brother who had come across a story in a local newspaper about a fundraiser they had just done. When I read about the Recreation Grant program I was amazed that there were others out there, like me, who recognized the direct connection between exercise and staying healthy with CF.

After meeting Brian randomly one day and hearing more about why he started the program I decided to apply for a grant. I had taken a few yoga classes for my Physical Education requirement for college and really wanted to get into it more, but at that time I just couldn’t afford it. I filled out the application and eventually found out that I had been approved for the grant. I was ecstatic to start taking yoga classes on a regular basis. Being able to go to classes weekly without the burden and stress of figuring out how I would pay for it had a huge impact on my overall health. I not only saw my PFT's (lung function scores) improve but I felt more positive than I had in a very long time. Something good and exciting had come of my having CF. Since then I have taken hundreds of yoga classes and I know it will always be something I do to stay active. 

I can do yoga year-round, at classes, or on my own at home. Practicing yoga is a skill I feel lucky to have and use it almost like I would a medication or treatment. Without the grant from the CFLF I don’t think I would have ever had that opportunity to get so involved with yoga and I doubt I would still be doing it today.

Now, almost eight years after receiving that grant, I run the Recreation Grant program and I get to give people good news on a regular basis that they'll be able to start going to a gym, or taking yoga classes, or swimming lessons or attending summer camp, and that they won’t have to stress about how to pay for it. Unfortunately, I also have to give people the bad news, that although their application was excellent and they clearly want and need the financial help for an activity, that our funding just can’t support them. 

It’s devastating news to receive when you have so many other things going on in your life to juggle. Like going to doctor’s appointments, navigating your insurance, filling prescriptions, paying bills, planning for hospital stays, taking all your medications at the right time, getting in multiple treatments each day, the list goes on and on. Having CF is a full time job and you never get a break from it.

I have found lately that my favorite part of the day is that time right before I go to bed, when I’ve done my last treatment, taken my last pill, checked my blood sugar for the last time, taken my last shot of insulin, and done my sinus rinses. After ALL of that is done there are a few minutes that I don’t have to worry about anything. Then in the morning it starts all over again. But that's life and for the most part it comes as second nature. It’s so nice to get a break every now and then though, to worry about one less thing makes such a huge difference in the life of a person with CF. Even though it may seem like such a small thing, the feeling of being approved for a grant and knowing that you’re doing something in your power to improve your health and live longer is life changing. Believe me, I’ve been there.

When I received my Recreation Grant in 2009 I was the 44th Grant Recipient. Just a few days ago I awarded our 930th grant to a young woman who was about the same age I was when I got mine. She used her grant to get a gym membership because she’s currently putting herself through college and couldn’t afford one. She was one of the 40% of people who we were able to approve this past quarter. There were dozens of applicants who were part of the 60% of people we were not able to approve, simply because the funding wasn’t there. I can only imagine how devastating that news is to receive. Although I've never been denied a grant, I know all about the not-so-great parts about having CF, and getting bad news on top of all that can feel like an enourmous set-back. 

So please consider giving back this year, or paying it forward, if you were once a Grant Recipient, or someone who has been impacted by this program. We are hoping to award our 1000th Recreation Grant by the end of the year, which means raising $35,000. This year we have even given you the option of choosing which activity your donation will go to. If you love rock climbing, or surfing, or golf, you can designate your funding to go to that specific activity. There are several different acitivities to choose from and you can pick as many as you'd like. 100% of your donation will go directly to someone with CF who is applying for a Recreation Grant for the same thing. 

I know we can reach our 1000th Recreation Grant if we all give something. Please help make it possible for one more person with CF to be approved for an activity that will be life changing for them.

                                                              

 

 

Erin Evans is the Program Coordinator for the CFLF, as well as the organizer of the CFLF Blog. She was diagnosed with CF shortly after her first birthday and lives in Vermont with her husband and dog and nearby family. She can be contacted at erin@cflf.org

 

 

 

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