On my recent trip to Scotland and Ireland, I sat with a small notebook and a pen in my hand, updating my list of all the places we had walked during the day. One of the girls I traveled with asked me what I was doing, and I explained that I wanted to have the list so I could track how many miles we had walked during the weekend. The girls all realized that I was referring to my posts in "Run for the White House for Childhood Cancer Awareness 2014," which popped up on their newsfeeds but had never come up in conversation. It was then that I first encountered the now-familiar question: "what are all the miles for?" I discovered that many of my friends were asking the same question, so here's my response, along with my answers to a few other Frequently Asked Questions.
What are all the miles for?
"Run for the White House for Childhood Cancer Awareness 2014" is an awareness campaign started by Brian Jones, whose son Lincoln was diagnosed with cancer in 2011 and has since become one of the loudest advocates for childhood cancer in the country. In January 2013, he and friends began to track the miles they ran, covering the distance from Brian's hometown to the White House. Word spread, and the event grew to include runners, walkers, cyclers, and more from every state as well as international partners.
As the event grew, teams formed to recognize different children. Team Smashing Walnuts runs for Gabriella Miller, an incredible advocate who lost her battle with DIPG - an inoperable brain cancer - at the age of 10. Brian's son Lincoln is the inspiration for members of Running For Lincoln. Many of the teams are running toward specific goals, while others are just uniting in support. Those of us who aren't on a specific team - like me - run for Team Follow Me or just for Our Kids, which means that our miles count toward the total but not to any specific child's team. The team name "follow me" comes from the phrase at the center of the campaign - follow me to the White House!
The event has also expanded beyond running. Participants can credit hours of zumba or yoga, lifting weights, stationary bikes, and more. My contributions are the miles I walk on campus or, more recently, the distances I walk while I'm traveling. I post 1.6 miles every Tuesday, which is the distance I walk to my school placement and back to the flat.
Last year, Brian and other runners gathered at the White House during Cure Fest, presented by TheTruth365. That day, they literally ran to the White House, cheered on by the hundreds of attendees. After taking a short break in the fall, Brian restarted the event for 2014. The goal this year is to run 1 million miles, and it's on track. In mid-February, the campaign reached 100,000 miles toward the goal, and it continues to grow every day.
How did you get involved?
The first time I encountered childhood cancer, I was in the second grade. Early in the year, the nurse came into our classroom to talk about our classmate Eeva Crannell. We learned that she had been diagnosed with cancer a few years earlier, and that she had missed Kindergarten because of her treatments. I later learned that Eeva's diagnosis had been Leukemia, a blood cancer, and that a bone marrow donation had saved her life. By the time I met her in second grade, however, Eeva was in remission.
All through school, Eeva was there. We shared a few mutual friends (Maddie comes to mind), but we were never close. As was the case with many of my classmates, Eeva was someone I rarely saw after I was put on the advanced track. In eighth grade, we took a class field trip to Lake Compounce, a local amusement park. When we stepped off the buses, everyone looked around for their friends, since the bus assignments had been alphabetical. I found mine, but before we left, we noticed Eeva standing alone, still looking around. The students she usually hung out with had all opted not to come on the trip, so we invited her to join us. She became part of our group for the day. A few weeks later, Eeva's mom ran into Maddie's mom and expressed how glad she was that we had invited Eeva to join us, and what a difference it had made. What had felt like a run-of-the-mill decision had turned out to be the highlight of her day.
High school was tough on Eeva. It's not easy for anyone, but for some people it's worse than for others. Eeva's past had never been a secret, but in high school, it became a weapon. At one point in the fall of our freshman year, Eeva was bullied off her school bus because she had had cancer. She stopped taking the bus after that, opting instead to be driven to and from school. I learned about this during a peer mentoring retreat in March of my sophomore year, from a fellow mentor who had sat silently on the bus as it occurred and wished he could go back and change that.
By the time I heard this story, Eeva had already relapsed and had been in treatment for a few months. She passed away on May 12, 2009, when she was just 16.
In the months that followed Eeva's death, I started to look for answers. I was frustrated and confused, and I needed answers. The facts I have learned are startling. 1 in 5 children diagnosed with cancer pass away within 5 years. After those 5 years, the death rate continues to increase, and the ones who live aren't in the clear. The treatments children receive can cause secondary cancers or heart failure. Children are plagued by hearing loss, poor vision, and depression and survivor's guilt. Some bear the physical signs of their treatments. The worst part, perhaps, is that these kids don't get the support they deserve. 4% of the government's budget for cancer research is dedicated to all 12 subtypes of childhood cancer combined. The American Cancer Society donates less than 1% of its funds to childhood cancer research. Pharmaceutical companies don't bother with childhood cancer research at all. Research is driven by private donations, mostly coming from childhood cancer foundations.
Luckily, there is an effort in the childhood cancer community to change that. When I started looking for answers, I began to follow the stories of many children on Facebook. One of these led me to TheTruth365, a documentary campaign dedicated to uniting the community, increasing awareness, and advocating for more research funding as well as less toxic treatment options for kids. Since last May, I have been coordinating the secondary social media for the campaign, which is how I learned about "Run for the White House." I also learned about the campaign I'll be working on this summer.
What's the campaign you're working on this summer?
Dancers vs. Cancer is a fundraising campaign sponsored by the Arms Wide Open Childhood Cancer Foundation (the parent organization that sponsors TheTruth365) and the Brad Kaminsky Foundation.
I first got involved with the campaign this fall as they prepared for the inaugural iDance4aCURE marathons, which were held simultaneously at 7 different studios on the East Coast. Collectively, the studios raised $75,000 of which 85% went directly to researchers searching for less toxic treatments. Following the marathons, I knew I wanted to get more involved with the campaign. After all, this was my forte. I have been a dancer since I was young, and I already had experience as an organizer as well as a member of the childhood cancer community. I sent an email to Lisa Kaminsky Miller, who runs the campaign, and included a link to the dance I had choreographed in the fall, which was inspired by Talia Castellano and Erin Griffin, two more loud advocates. (For those of you who haven't seen the piece, you can view it by clicking
HERE) Talia passed away in July 2013 when she was 13 after a 6-year battle with Neuroblastoma. Erin, also 13, has been battling DIPG for just over 2 years.
After she received my message, Lisa and I emailed back and forth for a few weeks, and I am proud to say that I will be volunteering full time with the campaign this summer. I've started part of what I'll be doing, which is developing a comprehensive database of dance studios in the United States. I send my progress on the database back to Lisa, who works with other volunteers to contact the studios. Aside from the database, I'll be working as an event liaison this summer for studios that decide to host fundraisers during June and July. My tasks will range from ensuring they receive shipments of shirts and materials to preparing flyers and press releases. When I'm not working on either of those aspects, I'll be drafting a plan to expand the program to college and professional dancers and the organizations with which they associate. This will mostly require adjusting the plan that has already been developed for studios to fit the needs and abilities of older dancers. My final goal is to connect the campaign in some way to the major dance publications. Ideally, the hope is to have the campaign featured during September, which is Childhood Cancer Awareness month.
So, what are all the miles for?
They're for Eeva, who should have graduated high school with the rest of us. They're for Talia and Gabriella, whose incredible advocacy still ripples through the community after their deaths last year. They're for Lincoln and Erin, who are still in the thick of the fight. They're for the 36 children whose families will hear the words "your child has cancer" today. They're for the 7 children who will earn their wings today. They're for all the kids who have lost their battles, all the ones who have emerged victorious, and all the ones who are still fighting for their lives and their futures.
They're for you to ask exactly that question.
