On September 17, Sarah Coleman and her husband Dan Ellis embarked on a sponsored walk from the top of Manhattan to the bottom. Sarah, who has Stage IV lung cancer with the ALK+ mutation, was inspired by the ALK Positive Facebook group’s initiative to raise $100,000 for a research grant to investigate why ALK+ lung cancer develops resistance to targeted therapies.
Dan: An advanced lung cancer diagnosis is devastating, not just for the individual but for a radiating circle of family and loved ones. My wife Sarah's cancer has massively changed the tone and priorities of our family over the past two years. All the anxiety and sadness I could live without, but the ability to focus on what's really important - that we love and care for each other, and all want us all to be happy - has been a plus.
Lung cancer is a bleak prospect. I'm quantitative by profession and nature, but thankfully we're at a time when the odds are not as black and white as they were. The emergence of targeted therapies for ALK and similar mutations have changed the playing field: in the brief time we’ve been involved we've seen multiple new drugs go into trials or get approved, and the prospects for lung cancer patients improve significantly.
Miraculous as the targeted therapies are, though, we still have to face the hard fact that they don’t last. It's so tantalizing: research has discovered this crucial vulnerability of the tumors, but instead of using it to defeat them altogether, we just hold them at bay until they figure a way around. But I feel inspired and optimistic that if we understand the mutation well enough to deliver this first, powerful blow, we can't be far away from figuring out a full strategy to defeat the cancer altogether or halt its spread indefinitely. That's why research is so exciting and such a vital thing to support, and why we threw so much effort into fundraising for the ALK Positive research fund with Lungevity.
Sarah: When I launched my campaign for the ALK Positive fund on Facebook on August 29 with the words 'Big Scary Announcement' (I hadn't yet "come out" as a lung cancer patient on Facebook), I had no idea how successful it would be. My initial goal was $1,500, and we blew past that in a couple of hours. In three days, the campaign had raised over $6,000. I kept having to raise the goal!
In return for donations, I pledged to walk the length of Manhattan, from 215th Street to the Battery, on September 17, calling the walk ‘Sarah’s Daring Walking Adventure.’ When it became clear that more than 30 friends wanted to join me for parts of the walk, I decided to get t-shirts printed.
On September 17th, ten hardy people in blue shirts met at the 215th Street subway station and proceeded south through Inwood Park. We were joined along the way by others (we'd set up GPS tracking so people could find us), and by the time we got to the halfway-point picnic site in Riverside Park at 107th Street, we had around 30 people. It felt amazing to be surrounded by such direct love and support. Honestly, for most of the day I felt I was walking on air!
All in all, 43 people participated that day and to date the campaign has raised over $15,000.
Dan: I love the fact that the community of ALK+ sufferers is getting together to directly sponsor research, since that seems exactly the right place to focus. I saw how this concrete objective and fundraising target galvanized Sarah into hatching the plan for the Daring Walking Adventure, and the wonderful, incredible, affirming response we got in terms of donations and support from our family and community. Sarah was in her element, spreading the word, inspiring people with her strength and commitment, and knowing exactly how to handle every detail, from the wording of the announcement to the design of the t-shirt (and how many to order) as if by magic.
The ALK+ fundraising project has been astonishing, greatly exceeding my most secret hopes, and a wonderful point of light. But monetarily it's tiny compared to the overall federal funding for health research, and I'm increasingly disturbed by the irrational neglect of lung cancer in comparison with other major health challenges - particularly when the prospects for major breakthroughs seem so promising. My great hope is that our outsized individual achievements in raising funds and awareness will multiply their impact many times over by nudging the opinions of the wider community, and our representatives in government, to fund research into lung cancer with the magnitude and urgency it deserves.