In 2010, at age 29, Jenna Benn Shersher was diagnosed with Gray Zone Lymphoma, a rare blood cancer that affects fewer than 300 people nationwide.  

During her treatment, Jenna felt deeply isolated due to a compromised immune system that kept her mostly confined to her home. To connect with others, she filmed herself dancing “the twist” and posted the video online, inviting others to dance with her. Thousands of people responded to Jenna with their own videos, and soon she found herself part of a global community of survivors. As she continued treatment, Jenna started to blog about her experiences, and the supportive community she unwittingly sparked continued to grow.

Not wanting to let that community disband when she finished her treatment, in 2012, Jenna founded “Twist Out Cancer,” a nonprofit organization that provides psychosocial support through creative arts programming for people touched by cancer. The organization’s signature program, “Brushes With Cancer,” pairs cancer survivors (“inspirations”) with artists. The pairs work together for four to six months, during which the artist develops and completes a unique work of art that that reflects one person’s cancer journey. The artwork is auctioned off at fundraising galas to raise money that allows the organization to reach more people.

Also offered are “Twistshops,” art-therapy focused workshops led by a registered art therapist that promote healing, relaxation, and emotional recovery to cancer survivors and caregivers to reduce symptoms of depression, anxiety, and stress related to cancer. Due to the COVID-19 pandemic, Twist Out Cancer is offering its complimentary Twistshops online for anyone feeling isolated during this unprecedented time.

What started when Jenna reached out for connection in her living room eight years ago has evolved into an international effort that has touched more than 130,000 people around the world. Today, Twist Out Cancer has programs in Chicago, Ann Arbor, Detroit, Toronto, Montreal, Tel Aviv, Philadelphia, and Austin. ACCCBuzz talked to Jenna Benn Shersher about how she created a supportive arts community that continues to grow.

What led up to that first video you posted?

When I was diagnosed with Grey Zone Lymphoma, I soon discovered how rare this cancer is. There was little information or research on it, and there were no communities for people who had it. I found myself struggling to find a community that would understand what I was grappling with as a young adult with a cancer that no one had heard of.

Early on, I noticed that the more I opened up about feeling lonely and isolated, the more other people opened up to me. So I started a blog that became a space for me to process my experiences, my feelings of body dysmorphia when I did not recognize myself in a mirror, the isolation I felt, and the disconnection from my family and friends with whom I no longer had much in common. One day, I wrote a blog post to put out a call to action for people to get together on their living room floors and do the twist and film themselves and post the videos. It was the only dance I could do at the time, due to the limitations brought on by my treatment. Within a couple days, thousands of people responded with their own videos. I had built a community without having any intention of doing so; it came out of a raw need.

Post-treatment, my writing helped me to better process what it was like to re-emerge, work, start dating again, and fall in love. Writing was a critical piece in my journey and a critical component of healing for me. Writing and sharing my writing put me leaps and bounds ahead of where I would have been without it.

How did you move from blogging to creating a nonprofit?

I wanted to do something with the community I built; it had lifted my spirits so much when I needed it. I decided to give back to the community that brought so much to me. Initially, the movement was solely in the virtual space. But I realized early on that uploading a video of yourself takes a certain kind of person, especially when you are not feeling well. So I put together a team of people to explore how to turn this into a viable nonprofit to benefit cancer research.

I met another woman diagnosed with Gray Zone Lymphoma through our mutual oncologist, and she had also put out a call to action during her cancer experience. She posted a video of herself bald and vulnerable, and she asked others to create a piece of art that did not have the color gray in it. Hundreds of artists all over the world started creating art in her honor. It allowed her to go back and feel creative again. That was the start of our Brushes With Cancer program.

What are some of the effects that COVID-19 has had on the cancer patient community?

It has been interesting to see similarities between what cancer patients experience and what everyone is experiencing during COVID-19. Of course, cancer patients are more vulnerable, but now everyone must deal with the issues of how to safely go outside, how to plan, and how to protect yourself. It has allowed us to create empathy between people outside the community and cancer survivors.

I think in a way we will have more allies for the cancer community now. People to a small degree can understand what it is like being diagnosed. Many people do not know what to say when that happens. Perhaps now they will be better able to understand the cancer experience.

How has COVID-19 affected your organization’s activities?

The organization has so many roots in the virtual space that have allowed us to pivot during COVID-19. With our platform, we could turn easily turn our activities into an online experience.

For our Brushes With Cancer program, we had three location-specific programs planned in 2020. Now, all the pairs of inspirations and artists will be connecting virtually online. Our orientation and kickoff will be virtual, and our galas, events, and art auctions may also be virtual. We’ve also transitioned our Twistshops—our art therapy curriculum for people touched by cancer—to online events. Historically we’ve only worked with cancer survivors, but now they are open to everyone.

We’ve also mounted the online Resilience Campaign that welcomes people to submit videos in which they talk about their experience with cancer, what they learned through that experience, and what they are going through now with COVID-19. It provides daily doses of hope and help for everyone. The project is on our website, and everyone is welcome to share videos. Filmmakers and composers have scored select testimonials. We want to make sure these videos inspire others during this difficult time.

For resources on COVID-19 as it applies to the oncology community, visit ACCC’s continually updated Coronavirus Response page. ACCC members can also access ACCCExchange, a forum that allows them to communicate in real time with their colleagues about how the COVID-19 virus is affecting their communities and their patients.