Glenna Crooks

Dakota Fisher-VanceFasten your seatbelts. You’re about to meet Dakota Fisher-Vance. Cancer could have derailed the impact she’d have on the world, but it didn’t. She was preparing for Med School, interested in education and looking forward, perhaps, to a day she’d work with children with autism.

Then, came cancer. Specifically, Familial Adenomatous Polyposis. I won’t tell you what she found on the web, you can read it here and understand her frustration about what she found. Then, came a desmoid tumor, another very rare condition. Statistically, she’s one in four million.

Except in my book, where she’s one in a billion. In the time since her diagnosis and treatment, she’s done some amazing – and DISRUPTIVE – things.  She’s having an impact and she’s someone you’ve got to meet!

Dakota, how is it that you and your friend Cara met and what led you to launch Young Adult Cancer Connection?

Fitting for our generation, we met on Facebook and at Starbucks. It was a little over a year ago. I finally felt ready to meet others who could relate to my cancer experience. It was after years of not wanting cancer to infiltrate my life, including my social life, any more than it already had. I turned to the Internet and learned quickly that while I was ready to meet other young adults with cancer experience, Philadelphia wasn’t. Eventually I came across an old Facebook post from Cara advertising a page for young adults like me in Philly. I asked to join and in the least creepy way possible, inquired if she would be interested in meeting a virtual stranger. That led to our first meeting at a Starbucks.Cancervention Dance

We talked about a myriad of things from hair loss to travel but, we kept coming back to our disappointment about the lack of opportunities in Philadelphia for young adults with cancer history to do what we were doing – connecting. Cara had been helping to organize sporadic happy hours with a group of young adults with cancer experience that emerged from a now-defunct support group. We wanted to make those gatherings more regular and expand them beyond happy hour settings. Cara was the first other young adult with cancer experience that I met. A few months later, we were collaborating to find ways for our peers to meet their first young adult with cancer experience, someone who knows what it’s like to be young, just not so invincible.

Cancervention was a major event!  How did that idea come about? What did you want for those who would be there?

We’re still over the moon about it since we conceived the idea only a year ago. Shortly after meeting Cara, I threw myself into the young adult cancer community and drove to Boston for Dana Farber’s annual young adult cancer conference. It was an incredibly transformative experience. Throughout the conference, I kept wondering why we couldn’t have something like this in Philly. Cara agreed but we were a new organization and didn’t think it was a feasible goal for the immediate future. While advertising our meetups a few months later, we casually mentioned the conference to Penn Medicine and all of a sudden we had a sponsor to help make our dream a reality. It was going to happen! It wasn’t a pipe dream after all!

We wanted young adults with a cancer experience to connect with each other – just like our name says. I think even we underestimated how multi-faceted that connection would be. The people who came not only connected with one another but also with the tons of material and resources available that day. They – and their friends and families attending – got more engaged, not just about their diagnosis but about typical young adult things – like careers and having a family. They learned these were not just their own, isolated concerns but rather, concerns felt by an entire community of people like them.

Before Cancervention, you told me how delighted you were to get Emmy Award winning Suleika Jaouad to be the keynote speaker.  What did you most enjoy about her being there?

Dakota Cara and SuleikaI need to stop gushing but her fantastically insightful speech merits high accolades. I’ve urged my network (which now includes you!) to watch it (available here until the end of the month) as so much of what she said resonated deeply with me and I think it has the potential to spark an organic dialogue about the young adult cancer experience.

For me, it was incredibly meaningful to hear her speak and even more so because it was at an event that I helped create and if not for her work, I don’t think I would’ve been in a position to do it. Her New York Times blogs were my first foray into the young adult cancer world. Her writing encouraged me to think about my future. For the first time in months, the future was not about fear or longevity. I was just like any other twenty-something trying to figure out what they wanted to do in the world. She was someone incredible and I wanted to be like her “when I grew up.” Getting to meet someone whose work you admire is always thrilling but, that elation is amplified in an indescribable way when their work helped you through a tumultuous time and laid the foundation for what you’re doing now.

And, also, I imagine from the many people who were there. What comments did you get from those who attended? Do you plan to have another event like this that again?

I wasn’t the only one who recognized Suleika’s speech as extraordinary. Everyone, regardless of their cancer history or lack thereof, commented on her immensely impactful speech…as well as the incredible impact of the day as a whole. They said they couldn’t wait until next year’s conference. That’s when Cara and I looked at each other and said, “I guess that means we’re doing this again!”

YACC members have already suggested future workshop ideas. As neither of us are event planners by trade, we learned a lot from this initial conference which we can apply to stage another, hopefully even more successful Cancervention.

We’re looking for help, so if you’re interested in helping us support this often overlooked group of people, please let us know!

I can imagine the work it took, but you have other events too, right? Some really creative sites for Meet Ups: The Good Karma Café, Philadelphia’s Magic Gardens, the Rothman Ice Rink and you have some others coming up.  Chill@The Juice Room sounds like fun. How are those going?

We run monthly, Philadelphia-based meetups for young adults with cancer experience which we alternate between informal, discussion based, café style meet ups and fun activities like ice skating and yoga that allow us to socialize beyond cancer and in a way typical for people our age.

Cancervention YogaWhat I love about our meet ups is that they allow us to connect with each other as well as our city. One member described our meetups as “the best date she had ever been on” as she could so freely talk about her life with people who can relate. Meetups are easier to plan and provide a great opportunity to talk and really connect.

The YACC website has tons of resources, which ones get used the most? What other resources do young adult cancer survivors need?

We’re not tech savvy enough to track the popularity of various resources and we’re also constantly adding new ones. With summer approaching, several members have discovered and plan to take advantage of the great organizations offering retreats for people with cancer experience over the age of 18 that are listed on our website such as First Descents and Mary’s Place by the Sea (myself included).

The sad truth is there are plenty of resources available for pediatric and adult patients but not a lot for people our age. We desperately need more resources designed specifically for this in-between age group in the cancer world. Right now, we’re lacking relevant medically- and psychosocially-oriented resources. On the medical side, young adult oncology is a newly emerging field and as it develops, I’m hoping so will a consolidated list of “centers of excellence” and doctors who specialize in young adult cancer.

Of course, our needs are not just medical ones.  Personally, I’d like to see more opportunities for young adults to connect online and in person across the country. We often talk about the challenges of communicating about illness at our meetups, so without doubt there’s a need for tools that teach friends, family, and strangers about broaching “the c-word” with people our age.

I think a lot of people want to help but, don’t know how so I’d love to see an app that identifies how people in a young adult’s network can help support them. That could be by providing a ride or a meal or sending positive vibes.

I love the ‘attitude’ on the site. Come YACC with us is the way to sign-up for emails.  

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