The spring is always a pretty exciting time for me.
We have a number of Boomer Esiason Foundation fundraisers each year that bring in a ton of money for the fight against cystic fibrosis. Just last week we were up in New Hampshire for the annual DCU for Kids golf outing, which we’ve not only been a benefactor of for as long as I can remember, but is also one of my favorite events since I get to spend some time in New England (former BC Eagle here…), and then of course we had the 22nd annual United Healthcare Empire Challenge, which pits high school seniors from New York City and Long Island in one of the biggest high school football all-star games in the country.
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The Empire Challenge is a game I played in back in 2009, and is one of my most cherished memories. The game seems to get bigger and bigger each year and includes people in the cause from all over the New York Metro area.
Proceeds from the game not only go to CF, but also to the youth football in the area.
Ultimately what is so great about the spring each year is that so many people, from all walks of life, unite under the cause of beating CF.
Couple those fundraisers with the half dozen other events or so that the BEF staff breaks their backs over each spring, including the Guinness Cup hockey tournament (we’ve done this one twice and I am yet to win it), and it’s not hard to see the impact that we can make in the world of CF thanks largely to ALL of our supporters.
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I think the main thing that I have learned in the world of fundraising for an illness or disability is that it’s important to give people a reason to play a role in the fight – and that reason is a personal connection. People who are donating time, money and energy to the cause must have a reason, and it comes down to the patients, and their support systems, to share their own stories in an effort to advocate for change and the possibility to move forward in the face of great adversity.
Beyond the fundraisers, we used May, CF Awareness Month, to highlight a couple programs, including my newest passion project, Cystic Fibrosis Around the World. CF Around the World aims to take a peak at some of the things people with CF are dealing with on a global level. We always toss around the number 30,000 – 40,000 patients (number of American CF patients) to indicate just how rare the disease is here in the US, but we must see ourselves as part of a larger community with a common goal in mind.
Just today, people in the UK protested their government and the National Health Service to allow expanded access to live saving medications for people suffering from the disease.
My “journey” around the world, and talking to patients and families, will continue until I’ve somehow managed to reach them all.
Another program that we have been highlighting this spring is Cystic Fibrosis Step-By-Step with Gunnar Esiason (we really need to come up with more original names for these things). For parents raising little kids with CF, the learning curve is a steep one. I don’t think CF parents are given enough credit for the amount of time and effort they put into caring for their children. In the end, they are the ones who have to develop and prepare a child’s skills enough to effectively combat the disease later in life – Step-by-Step aims to help in that regard. It is available on the BEF YouTube Channel or on the BEF Facebook page. Like anything else, let us know if you want to see us use an episode to tackle a specific topic.
Finally, this spring I added several CF Family Education Nights to my schedule. I spoke at the Children’s Hospital of Wisconsin in April and the Toledo Hospital in March. Those nights are just as much for you as they are for me! Selfishly I love Family Day events because I get to meet so many families and caregivers from all across the country. I also get to learn so much about the way people fight the disease in both a physical sense, and on a local community level. The differences are vast in each region (we’ll leave that for another blog post – content is everything in this line of work).
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(I’m a big selfie guy)
If you want me to come speak at your CF Center’s Family Night, tell your clinic to send me an email at GunnarsBlog@Esiason.org! The calendar is already starting to fill up for the coming year.
So, I just want to say thank YOU for continuing the fight against cystic fibrosis. The disease is isolating, but with an ever-expanding support system, the tough days are just a little easier.