Fundraising ideas: Backyard BBQ shows need to know your audience - Joubert Syndrome & Related Disorders Foundation
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Barbecue for Joubert Syndrome and Related Disorders Foundation
Leyla Swenson gets some love at her family’s barbecue fundraiser in October 2017. The party raised about $3,500 for the Joubert Syndrome and Related Disorders Foundation.


October is Joubert Syndrome Awareness month. All month long, the Joubert Syndrome and Related Disorders Foundation is encouraging members of the JS community to take part in the second-annual $31k in 31 Days fundraiser.

You can raise money simply by asking your family and friends to make a donation to the foundation during the month of October. They can donate through the $31k in 31 Days page, your personalized fundraising page (you can create one here), or even by mailing a check to the foundation (please encourage them to make their donation in the name of an individual or family affected by Joubert Syndrome).

But if you’re looking for other ideas, keep an eye on the JSRDF blog throughout October. We’ll be profiling a few successful fundraisers organized by members of the JS community. Fundraisers like this one:


Jenni and Eric Swenson have some advice for anyone who wants to host a fundraiser event:

Know your audience.

In October 2017, the Swensons hosted a backyard barbecue to raise money for the Joubert Syndrome and Related Disorders Foundation. It was an event specifically designed to appeal to their friends and family. And clearly, it worked.

Sure, the Swensons had conducted a handful of fundraisers for the foundation in the years since their daughter Leyla was diagnosed with Joubert Syndrome, but none of them brought in a particularly large amount of money.

The barbecue, however, generated about $3,500.

Why did it work? For one, the Swensons started by asking themselves what might drive their family and friends to open their wallets.

For some families, organizing a black tie affair might’ve been the way to go. But the Swensons decided that their crowd was more interested in hanging out, eating good food and having some drinks, said Jenni Swenson, who is currently president-elect of the Joubert Syndrome and Related Disorders Foundation.

With that in mind, they took stock of the resources they had: The house they lived in at the time had a nice backyard and a fire pit. Plus, Eric Swenson, who is past president of the foundation, enjoys smoking meat. So a barbecue only seemed natural.

The event attracted about 30 adults and a bunch of kids – pretty good for what turned out to be a particularly cold day in the Minneapolis area (a problem they addressed with hot chocolate and a steady supply of firewood). The Swensons asked for a suggested donation of $75 per plate; some people paid more and some paid less.

They also hosted a silent auction during the event – and paid attention to the interests of their guests

Eric Swenson made these bean bag boards for the silent auction.

when deciding what items to include. For instance, Eric made a set of Minnesota Twins bean bag boards for the auction, and Leyla’s godfather built some custom wine racks.

Jenni Swenson said that being able to give donors something made it easier to raise money.

“Think about it … if I am going to give $250 to a cause AND I can get a meal AND maybe go home with some sweet bean bag boards, why wouldn’t I do that versus making a large donation and just getting a thank you and the tax write off? We are all human, right?” she said.

Interested in planning something similar? First, think hard what your family and friends would enjoy, Jenni said. If they’re a bunch of vegans, maybe don’t go the barbecue route, she said.

Then ask yourself what resources you have that might help you pull off a great event.

“Maybe, you don’t have a giant backyard but, you do have a really great home for hosting or you have a friend who owns a winery,” she said. “Don’t be afraid to take an idea and switch it up to fit what interests your community.”

And before you start sending out invitations, know that you will probably have to spend some money to make the event happen.

“But we considered that OUR donation for the event,” Jenni said.


This wine basket was one of the silent auction items sold at the party.