Have you ever thought to yourself, I’d love to do something for the chordoma community, but I’m not sure where to start? Don’t have the time or ability to host a fundraising event or launch a champions page, but still want to make a difference in the lives of chordoma patients and families?

Consider creating a Facebook fundraiser. It’s a fantastic (and easy!) way to engage your friends, family, and social networks in supporting the Chordoma Foundation anytime, anywhere.

Since January, more than 70 people have hosted Facebook fundraisers to support the Chordoma Foundation, raising an incredible $26,000 for better treatments, better care, and a better experience for everyone with chordoma. And because Facebook waives all the donation fees, every dollar donated through the social media platform comes directly to the Foundation and helps us fulfill our mission of improving lives and accelerating cures.

Here are the stories of three individuals who recently hosted their own Facebook fundraisers to support the Chordoma Foundation, and what the experience was like for them.

Tina Brenneman, spouse

Amount raised: $2,020

“It’s probably the easiest fundraiser you can do. The format is already there. You choose how much to share of your story, you click a few buttons and that’s it.”

Earlier this spring, Tina got a random prompt from Facebook asking her if she’d like to host a fundraiser for a favorite charity. It came at a meaningful moment for the Brenneman family, a few days before Tina’s husband Nate was scheduled to have surgery for his clival chordoma and a few weeks before Tina’s birthday. The previous three years had been a roller coaster for Tina, Nate, and their kids as Nate battled, recovered from, and re-battled a recurring clival chordoma. And while they consider themselves fortunate in many ways – they have a loving family, a tight-knit faith community, a trusted care team, and a beautiful home – their journey has not been without challenges. In the past, recognizing the many blessings in her life, Tina had always encouraged friends and family to donate to causes that matter to them rather than giving her birthday gifts. But this year, it felt particularly meaningful to ask the people she cared about to support the Chordoma Foundation and help drive better treatments and care not only for Nate but for everyone with chordoma.

“I was surprised at how far the request went and at all of the people that stepped up. It was touching, and very meaningful. Not only did they make donations, but many people I hadn’t spoken to in years reached out and shared the health issues their own families were facing. To be able to give and get support in that way was pretty special. And it only took ten minutes and the willingness to be open about what we were going through.”

Jonathon Leubner, patient

Amount raised: $740 through Facebook plus additional donations made directly to CF

“I don’t usually post things on social media. In fact, until recently, there were only a few people outside of my closest friends and family who knew I had chordoma. I never wanted it to be chordoma and Jon or cancer and Jon. I just wanted to be Jon. But on my 60th birthday, as I reflected on the past 10 years, I realized how grateful I was for the experiences I have had and I decided to put that gratitude into action.”

Jonathon is a father of three, an award-winning music producer, and a 10-year chordoma survivor whose clival chordoma has recently metastasized. With multiple recurrences and “more surgeries than I can count on both hands”, he’s no stranger to experimental treatments and has worked with several doctors and care teams. Despite preferring to keep his condition private in professional and social circles, Jon and his wife Mary decided in 2016 to attend one of our Chordoma Community Conferences. They found the experience of connecting with other patients and families to be profoundly meaningful and have been involved in the Foundation ever since. A musician himself – he plays the piano, bass guitar and drums, as well as singing vocals – Jon’s first love has always been his work. But after 30 years of owning his own studio and producing countless theatrical and commercial tracks, he’s recently made the difficult decision to retire. So, when Facebook prompted him to host a fundraiser for a special cause on his 60th birthday, Groundhog Day, it inspired him to take the plunge. And while he didn’t expect it to be difficult, it turned out to be even easier than he imagined. Jon set to work immediately writing up what he wanted to say and fifteen minutes later his fundraising post was live. Within a few days, it had garnered several hundred dollars in donations and numerous personal messages that reconnected Jon with old friends and colleagues.

“When we first got involved with the Chordoma Foundation, we noticed that the fear we’d been holding onto was turning into a feeling of community. They were helping us, and we realized maybe we could help someone else. It was a wonderful feeling to realize you’re not alone. That’s why I asked my friends to donate to CF for my birthday, because of what it’s meant to me, and what it will mean to others. I asked for just $1, knowing some would do more and some might not donate at all, and the result has exceeded my expectations.”

Chris Jones, parent

Amount raised: $2,473

“Get personal with your story. It doesn’t need to be long, but there should be an opening, an explanation, and an ask. I asked for a high quantity of small donations – 100 people at $10 each.”

Chris has always been a storyteller, but his is a bittersweet story to tell. After losing his daughter Madison to chordoma, he discovered that even when he wanted to talk about her, others would sometimes shy away or shut down, unsure of what to say or do. Both Madison and Chris were very open about sharing their experiences (and the light that Madi radiated out into the world) throughout her diagnosis and treatment, and he thought that her birthday would be a good time to reconnect with friends, both his and hers, and ask for their help to support other chordoma families. Prompted by both the anniversary of Madison’s birthday and the revelation that the tissue she donated before she died had been used to create a cell line to help advance new discoveries about chordoma, Chris decided to take action. It took less than 20 minutes for him to create the fundraiser. He personalized the language that was pre-populated and replaced the stock photo with one of Madison. Using his own words and experiences, Chris explained the reality of chordoma for families like his and the need for support, leaving readers with a confident message of hope and promise that inspired almost 80 people to give, and with many giving more generously than requested.

“Madison was a beautiful song; just too short. The light and legacy she left behind lives on in many hearts, and we’ll continue supporting the Chordoma Foundation so that every family affected receives support, has the latest information available to make informed decisions, as well as expert guidance to find the proper treatments required for this complex disease.”