These $500 recreation grants are given out to recipients with CF in order for them to be able to participate in a physical activity that's benefits go beyond that of just physical. Olivia used her grant towards her dance classes for the 2017-2018 school year. The benefits that Olivia gains from participating in dance are beyond that of just exercise. She's building relationships with others, learning about teamwork, how to follow order and direction. She's discovering things about herself; likes, dislikes, things she does well at, things she needs to work on.
We know that CF is a complex disease. We know that while it wreaks havoc on all parts of the body, the lungs are of the utmost importance. We know that in order for a cure to be beneficial to Olivia, her lung function has to be maintained. We know that CF is a progressive disease that gets worse year after year.
Exercise is good for all of us, CF or not.
As Olivia was lucky enough to be selected as a grant recipient, I've been lucky enough to get to know more about this organization and receive news about it from their newsletter. As Jeff and I were reading through the most recent newsletter we both agreed that it's a pretty awesome organization.
The founder, Brian Callahan is now 42 years-old living with CF. Pushing himself hard through exercise, not only are his lungs thriving but his lung function is actually increasing, back up toward the 100th percentile with a disease that destroys lung function progressively. How amazing is that?!
Here are a few tidbits from the CFLF newsletter that I found were really compelling and too good not to pass along. Pay close attention to the paragraph in pink. When I read that, not only did my heart skip a beat but I realized it's so true of Olivia as well. It fits her to a t. No matter what kind of junk is thrown her way, no matter what she has to endure, she still is optimistic, strong, loving and courageous, through it all. She's so much better of a person that I will ever be and for all that she has to live through every single day of her life, that she takes in stride, she'll always, always, always, be my hero.
"What does "awareness" mean? Is it just hearing the words cystic fibrosis? Or is it understanding the genetic lung disease that also affects the digestive system, endocrine system (diabetes), reproductive system, the liver and kidneys? Or is it understanding the lived struggles and challenges faced at times by me and 30,000 others in the US and 70,000 worldwide including chronic anxiety, depression and emotional isolation.
The undying optimism, strength, courage, joy and love that emanate from a person with CF is something that you will never forget. Especially when they are faced with the most pain, worst prognosis, or even end-stages there is a hope and appreciation of every moment of every day that pierces through it all.
Cystic fibrosis as a lifelong progressive condition does not have a cure, remission or break from the weight we carry. Good news is cherished and critical to maintaining hope and a positive mindset. The CF Recreation Grants provided by the CFLF are one instance of good news that impacts the lives more broadly than the exercise itself."
Click here to read the entire CFLF May Newsletter
My heart and soul and fundraising efforts will always be with the CFF, the organization that is working toward a cure for Olivia and all those with CF. However, because the CFLF organization is also helping those with CF to live longer lives now and because they awarded Olivia a grant, Jeff and I are also supporting this foundation.
If you are in need of donating to another worthy cause, it's definitely one worth looking into.