The Birth of an Advocate
Prior to the spring of 2018, I’d never really thought much about being an advocate. I had advocated for people at work, my children, etc. but I had never consider the term as a title. All that changed in April 2018.
My wife Emily and I walked into a crowded hotel ballroom in Washington DC. We knew no one. We knew everyone there shared a common link- Lung cancer. LUNGevity Foundation’s Hope Conference is a gathering of lung cancer survivors, caregivers, doctors and advocates. That was where I first heard “Advocate” used as a title and a verb. It was where I learned that title or not- I wanted to advocate. I wanted be an Advocate.
In this room full of lung cancer effected people, I felt a common thread of urgency. Whether you were advocating for research or making friends, everyone understands time is precious. While everyone seemed very laid back, this group was serious about making the most of our remaining time. They understood, better than most, that more time in life is not guaranteed. Within this group, we felt an incredible desire to make the most of every moment. The question was how.
Emily and I left the conference with many new friends and a burning desire to do something. The sobering fact is that much of the advocacy work for lung cancer is done by someone other than survivors. The lethality of the disease leaves lung cancer without many survivor advocates. While the desire to act was strong, we lacked clear direction and our plate was already very full.
We talked with more and more people, prayed and considered what could we do. In a room full of compelling stories was there anything that was speaking to us? YES! There was! These people that I met didn’t look anything like my preconceived notion of a lung cancer survivor. There were dozens that were under 50 years old. Nearly all were non-smokers or never-smokers (like me). Most were physically active- runners, hikers, kayakers, climbers, etc. I loved getting to know them. Their stories are amazing. These stories need to be told. It thought, if more people heard these stories, we could change the stigma that lung cancer is a result of smoking. This stigma contributes to the significant disparity of research funding compared to other cancers. What if we could help to reduce or eliminate that stigma- the impact could be huge.
The second question- what makes us unique? The most glaring difference was my running streak. Running every day for 100’s of days in a row is pretty crazy anyway. Doing that with lung cancer and on-going chemo and immunotherapy treatments made this especially nuts. A favorite saying in the streak running community is “No Days Off!” This seemed very appropriate when compared to the advocacy work and research needed to cure this disease. While the last thing I wanted is for this to be about me, I needed to leverage the situation and platform for maximum results.
Over many months of consideration, we decided on Streak for a Cure. With the help of a handful of amazing people, the website, logo, mission, etc. were created and started to evolve. We want this effort to be about how Faith and Hope can (and should) lead to Action. We want to do our part to #changethefaceoflungcancer.
While we are obtaining our 501c3 status as an official nonprofit (target early 2019), we will continue to give any money that we raise to organizations like LUNGevity. They already have the connections and infrastructure to make a difference. We will do our part and try not to replicate that which already exists. I believe we can make a difference. I believe you can be a part of that difference. Thank you in advance for your support. Regardless of what you decide to do, I hope that you will act. Share, give, run, pray, write, fundraise- the opportunities are limitless! I also hope you will share our sense of urgency. For many of us survivors, we need newer and better solutions. We need them now. We need a CURE! Lung cancer is a relentless disease. We need to be equally unrelenting in finding a cure. You can help. You can be an Advocate!
Together we can change outcomes for people with lung cancer. Here at Streak, we hope to do our small part in that effort.
If you have interest in attending one of LUNGevity’s conferences, click here.
Thank you for everything you are doing to advocate for lung cancer awareness. I’m coming up on my 1st year cancerversary next week. What a difference a year has made. I’m hoping to make it to a conference soon. I want to advocate..I think this us what I’m supposed to be doing but have no clue where I’m needed most.
The Lungevity link doesnt seem to be working to connect to their events.
Hello Donna- Thanks for the note. Congratulations on your one year cancer-versary! Are you going to the LUNGevity World Conference in DC in April? If so, my wife and I would love to see you there!