May is Neurofibromatosis (NF) Awareness month. Typically, if COVID-19 were not still lingering, my husband I would be looking forward to a big event that is near and dear our hearts. Together with our friends and family, we'd all be gathering in Madison at the 'Great Steps For NF Walk' bringing awareness and celebrating those fighting to live life with NF. NF is a degenerative gene disease that causes tumors in the nervous system... typically in children... and my nephew, Eli, is one of those awesome, incredibly admirable NF Warriors.
Since discovering the first tumor at age 3, Eli now has four confirmed brain tumors, one unidentified object in his brain (doctors believe may be another tumor), three spinal tumors and multiple nerve ending tumors just under his skin that bother him on occasion if bumped or rubbed. He's undergone two different regimes of chemotherapy with the hopes of slowing the growth of his tumors to save him from loss of vision and paralysis. And, he's had to undergo brain surgery to correct hydrocephalus from a tumor that grew to compromise the third ventricle in his brain.
Through each and every day, Eli remains to be an optimistic NF Fighter. He likes riding his bike, camping with his family, watching basketball (looking at you Stephen Curry) and has a passion for helping Dad with the family excavating business -- which prompted the team name, Dozers. He's a great big brother and doesn't let NF stop him from being a regular kid.
In addition to tumor development within the nervous system, this disease is also known to produce bone deformities and tumors on nerve endings that cause pain, heart conditions and much more, including cancer. Due to the fact that there is no cure, nor any way to manage or even slow the development of the disease, patients are left with little direction other than hopes and prayers while monitoring their tumors between MRI visits. Midwest NF is an organization that raises money to help to improve the lives of those living with NF. And the money raised at each year's 'Great Steps 4 NF' event helps to fund clinics, awareness, research, education and support to NF families.
By now Im guessing you're thinking... 'Ok, so your nephew is a total rockstar.... but tell us about your cornhole boards.'
One year before the Midwest NF Walk, I told my husand I wanted to enter something in the silent auction event. But after realizing I didn't know what to offer, my husband suggested we build cornhole boards, claiming "What else says 'Midwest' like 'Cornhole'?" And that was the start of an annual endeavor. My husband handles the majority of the boards' construction including the Home Depot run for materials, trimming everything to size, and assembling them -- with some assistance from me as an 'extra set of hands'.
Once the technical work is done, the fun part begins! I get cracking on applying the primer, paint and/or stain. In between coats I work on a quick design decal, print (shoutout to Sellars for donating my use of their large scale printer and adhesive canvas to print the decal) and apply it with my husband -- this time he's the 'extra set of hands'. Then the boards get a few coats of polyurethane sealant and the get taken to the event to find their new owner.
Easy peasy when it's all written out, but oh boy can it be a lot of work -- especially for those who know what it's like to work in an unheated garage in late March/early April here in Wisconsin! But they are worth all the effort, as each year they are pretty well received at the silent auction. We've even had a couple side orders for those who didn't want to wait until the following year to take another crack at the auction. One of the greatest compliments we received was even from one of those side orders:
"Our NF boards are our go-to summer game. We take them to tailgate events, BBQs, camping... pretty much everywhere! And we LOVE when someone asks "What's Neurofibro-what-chya-ma-call-it?" The more awareness we create, the closer we get to a cure for this disease." -Melissa Martin, an NF Warrior's Mama
To learn more about NF, or to find out how you can get involved in raising awareness, supporting events, or fundraising... check out Midwest NF (https://www.nfmidwest.org).
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