Leading The Way: Joelle Syverson

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We grossed $250,000 and netted $221,000. The gala committee thought it was great. I did too, but I was disappointed we couldn’t donate more for research …

After COVID-19 hit, Joelle Syverson, Founder and Board Chair/President of Humor To Fight The Tumor, and her committee considered considered cancelling the annual fundraising gala, but decided to hold it virtually instead.

Why did you decide to launch Humor to Fight the Tumor?

When I was 34, I was diagnosed with an incurable recurring brain tumor. I had three little kids – ages five, three and eight months – and the first course of treatment for me was surgery, which is always the most effective initial treatment. Two years out from my first surgery, I had a great quality of life and felt like I needed to give back so I enlisted my sister and three college girlfriends. I told them I had an idea for a event to raise funds for brain tumor research. I knew three other people who had also been diagnosed with brain tumors. If the four of us came together and shared our stories, I thought we could pull off some type of fundraising event by inviting our friends and family. I had never organized an event like this before, and I wasn’t super confident about how it would turn out so we decided not to open the event to the public. As we were planning the first gala, someone asked me if I had a fundraising goal. I said, “A goal? I’m just a stay-at-home mom. I have no clue. Maybe $10,000?” Shockingly, we maxed out our event space that first year with 450 people in attendance and raised over $92,000.

From 2004-13, we raised funds for the American Brain Tumor Association (ABTA) but as we got bigger and started to raise more money, the ABTA suggested we spin off and form our own nonprofit. As a fundraising arm of the ABTA, the staff had to send out all of our tax letters and tax receipts. They’re not a huge organization, and they were doing a lot of work for us.

In 2013, we got our 501(c)(3). We continue to raise funds for the ABTA, but now we also give money to the University of Minnesota, the Mayo Clinic and the Givens Brain Tumor Center at Abbott Northwestern Hospital. We also give out quality of life grants to organizations like Angel Foundation, Gilda’s Club, Pinky Swear Foundation and Hope Kids.

Tell me about Humor to Fight the Tumor and the arc of your fundraising.

Humor to Fight the Tumor (HTFT) is a Minneapolis-based nonprofit dedicated to raising funds and awareness for brain tumor research and patient services. HTFT has no paid staff, allowing 100% of the net proceeds to fund research and patient services. The all-volunteer organization spends less than 1% of its revenue on operating expenses and has raised over $4.5 million since its launch in 2004.

As I mentioned, we raised $92,000 our first year. Every year after, we raised a little bit more and currently raise about $400,000 every year.

When did you realize you were going to have to do something different this year?

After COVID-19 hit, we watched all these other local events switch to virtual. At HTFT, we’re all volunteers. We don’t have staff. We really have no expenses since we do everything out of my house and my co-chair’s house. So we could have easily skipped a year. But when we talked to our auctioneer, who also has a fundraising consulting business, he recommended we hold our event virtually in order to keep the momentum going and retain our donors.

We had already paid the deposit for the venue where we hold our gala, but once Minnesota cancelled the state fair, we were able to go back to the venue and ask them to forward our deposit to next year. We normally have a committee of 20 people who put the event on, ten board members and ten volunteers, but we decided to have the board run it since we couldn’t meet in person.

How did you handle your corporate sponsors?

Normally, we raise $150,000 before the gala in corporate sponsorships. I thought we could still raise at least half that amount. Our corporate donors are loyal to our organization, and if they don’t want to or can’t give, they’ll say so. In the end, we raised over $120,000 from our corporate sponsors, and that was without our $25,000 presenting sponsor, a wealth management firm. The firm wasn’t able to give this year, but they told us to be sure and come back to them next year.

How do you raise the rest of the funds?

We have a live auction and a silent auction. Normally, we have 100-120 silent auction items and six live auction items. We scaled back to 30 silent auction items and four live auction items. We also do a paddle raise. We’ve come close to raising $200,000 from the auction and paddle raise although we usually average around $150,000. This year, we raised $35,000. It’s hard. Normally, you’re sitting at table, other people are raising their paddles and that inspires everyone else at the table to give. There’s just an energy in the room, plus we do our giving moment right after our honoree video.

Each year, we show a video telling four people’s stories. Some years, it can be heavier than others, but it’s always inspirational. Right after we show the video, we invite the honorees and their families onto the stage to stand in front of our MC and our auctioneer. It’s their moment. Some honorees struggle physically to get up on stage, some are in wheelchairs, and others have passed away. It just breaks your heart. The whole audience stands up and gives them a standing ovation, then we do the giving moment because everyone’s heart is being pulled. We just couldn’t recreate that moment virtually.

What surprised you most about this year's event?

The willingness of people to give, even though they weren’t going to get their sponsor goodies or the same level of recognition. I had one sponsor reach out before we even knew what we were going to do to say he was sending a $5,000 check. I told him that we didn’t even know if we were going to have the event at that point, but if we didn’t, I would send the check back. He said, “That’s not what this is about. Just keep it.” People were so generous. There were a few who declined to donate, probably because they weren’t going to have their name in the program or a full page ad, but only one or two.

How much did you raise this year?

We grossed $250,000 and netted $221,000. The committee thought it was great. I thought it was great, too, but I was disappointed that we couldn’t donate more for research. There’s always such a need. But at the gala, the University of Minnesota provided an update about a research initiative we’ve been funding for a number of years. They’re going to be launching a clinical trial in October because of the money we’ve been giving them. So that was exciting and gratifying.

What did you learn from this experience?

I’m grateful for what we were able to do this year virtually, but I’m eager to get back to in person next year. People have suggested we hold a hybrid event, part virtual, part real, but I don’t think that would work. I’ve had some people say, “I’m looking forward to the event being virtual again next year because I don’t have to dress up or drive downtown.” I worry that too many people would choose to join us via Zoom instead of attending in person.

Will you hold the event virtually again, if you have to?

Now that we’ve done one, I definitely think we would do it again vs. not holding the gala at all. The challenge will be the honoree piece. This year, we went back to three people we’ve honored before and recorded an update with each of them. Since the event wasn’t going to be in person, I didn’t want to take the experience away from potential honorees and their families who hadn’t yet been honored. I felt like they were going to get gypped. We make a big deal out of them because it’s their night. They invite their friends and family. Some honorees have brought close to 100 people. If we can’t gather in person, we’ll have to find a way to do this virtually.

One last question ... where does the name come from?

When we were planning the first gala, I told the committee that I knew I wanted to hold a dinner, honor brain tumor survivors and have a physician share an update on what research is happening in the brain tumor world, but I didn’t know what else we should do. Somebody at the table suggested a dance, which I wasn’t that excited about. Another person said he could get Bill Arnold, a local comedian, to provide entertainment. The group agreed, and we became Humor To Fight The Tumor. Laughter is awesome medicine when you’re going through treatment for brain cancer. Sometimes, you laugh, and it releases so much. It feels good to laugh, and the name has been a good fit for us.

Joelle Syverson is the Founder and Board Chair/President of Humor to Fight the Tumor Foundation (HTFT). Three years after being diagnosed with a non-curable, recurring brain tumor in the spring of 2001, Joelle desired to make a difference. With the idea of a gala in mind, and knowing three other people affected by a brain tumor, Joelle asked her sister and three college girlfriends to help. Their help launched a grassroots organization that has raised over $4.5 million. Prior to founding HTFT, Joelle attended St. Olaf College where she majored in economics. After a ten year career in the business world and the birth of her second child, Joelle made the decision to become a full-time stay-at-home mom, later having a third child. Joelle and her husband of 28 years are the proud parents of three adult children.