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"All in the Family" Gets a Whole New Meaning

Updated: Aug 25, 2022

- One family’s determination turns their fundraising efforts into a huge success for SELENON -

In November 2020, (then) one-year-old Finn was diagnosed with the rare genetic disorder SELENON-related myopathy. His parents were devastated to hear the diagnosis and quickly learned that funding for this rare disorder was scarce.

Turning to people closest to them, the entire family gathered in December 2020 to propose a golf tournament to raise money for SELENON research. Not having any experience executing a golf tournament, they were grateful to find so many willing to chip in, donate, sponsor and golf. In July 2021, the first ever Swings for Finn Golf Tournament brought in over 256 golfers and volunteers. The event raised over $80k!

Going into year two, Finn's team felt good about the possibility of making the event another success. With great excitement, the families are happy to share that the Second Annual Swings for Finn Golf Tournament raised even more than the first year: $88k! Thanks to repeat sponsors, family like Finn's grandparents, repeat golfers, and new friends made year two another success.

The next golf tournament is June 12, 2023 and it is our intention that the golf tournament will continue beyond, thanks to the team rallying behind Finn and his family's goal for treatment. While SELENON may be rare, their fight will carry on until treatment is possible for Finn and all navigating this rare genetic disorder.

Cure CMD was able to connect with Finn's grandma, Terri, and learn a bit about this amazing event.

Cure CMD: I know this is the *second* annual Swings for Finn Golf tournament. Had you ever organized a golf tournament like this before last year? What made you want to organize a golf tournament, specifically, to raise funds?

Terri: We had never organized a golf tournament before! A couple of our immediate family members had just started brainstorming ways to raise research funds and out of nowhere, Ronnie's cousin, Travis came to us with the golf tournament idea and off we went!

Cure CMD: About how many attendees did you have?

Terri: Around 260 golfers both years. We could have 288 but wanted to have a faster pace of play.

Cure CMD: How do you find sponsors?

Terri: Most of our sponsors are companies affiliated with friends, family or came from word of mouth. For example, our biggest sponsor heard about our event from a friend of Finn's mom! They include friends and family, employers of family and friends, companies owned by family and friends plus our dentists, insurance agent, financial advisors, mortgage broker, lawn care service, local roofing company, etc.

Cure CMD: What's the event prep like? How many people help organize it?

Terri: Seven of us this year, but less could definitely do it. The main steps include securing the golf course, choosing your sponsor and player package fees (we looked at other tournament pricing in the area), setting up the registration website (Perfect Golf Event makes this easy), determining what food and beverage you want to provide, determining what you want to include in the golfer goodie bag, determining if you want to include a silent auction or raffle prizes at the event, ordering tournament signage (tee box signs to welcome banners) and choosing if/how you're going to acknowledge tournament winners.

Cure CMD: What's the day-of like? And do you take the entire next week to relax and do nothing? ;-)

Terri: The day of is so fun! For us, tee off starts at 10 and wraps up around 4. The golfers come earlier to register, get their goodie bags, buy raffle tickets—we offered donuts and muffins (way too many!) this year. After the tournament is over, we offer a meal at the golf course, wrap up a putting contest, hand out the raffle winnings plus say a few words. We have a blast! It's such a special gathering of people that don't just want to have a fun day but believe in your cause and WANT to help!

Cure CMD: Do you have any words of wisdom for people interested in holding an event like this, or any fundraising event?

Terri: Words of wisdom.... hmmm... people WANT to help, don't be afraid to ask for help with any of it—from choosing a golf course to asking companies to sponsor. Any big fundraiser is just several smaller tasks put together—easy to divide and conquer! Companies often have an annual budget for charity—ask them early! A couple companies told us to reach out to them 6-7 months prior for things like sandwich donations, donut donations/discounts, silent auction items, etc. We are happy to help others with the setup—we're all in this together!


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