Advocates In Action SeriesMeet lung cancer advocate KATIE BROWN!Katie Brown is the youngest of six and was a former paralegal from Texas before sheturned into a full-time inspirational lung cancer advocate in 2002. In September 2002her father was diagnosed with lung cancer. Frustrated by the lack of information andsupport she could find online, “I tried to look for resources and support and I didn’t findanything local or online available specifically for people affected by lung cancer, ”sheand her husband co-founded the online Lung Cancer Support Community (LCSC), thefirst online lung cancer support network in November 2002.Today the online group hasover 10,000 members who offer one another support, encouragement, advice, andhope. But Katie didn’t stop with LCSC. She also became active with the Lance Armstrong Foundation, GRACE, Research Advocacy Network, Smoke Free Texas, and CPRIT and is still active with them today. She actively seeks out any opportunity to train and learn from other advocacy groups and medical professionals. On November 5, 2006 a member of the LCSC message boards, Heather Saler, who had been diagnosed in her 30’s with lung Figure 1 Katie Brown and her dad, Jessee Deweycancer, coordinated the very first lung cancer walk. Heather wanted to raisefunds to go toward lung cancer research to find out why someone like herself, withoutany risk factors, got lung cancer. At the time, LUNGevity was the only organizationexclusively funding lung cancer research. And so as a result, Katie supported andvolunteered with LUNGevity for many years, later became a consultant for them, and
eventually in 2010 became employed by LUNGevity full-time as the Director of Supportand Advocacy. She also manages the Foundation’s social media efforts.Katie’s enthusiasm and persistence doesn’t just stop with supporting and working withLUNGevity. Last year she requested a personalized license plate to advertise how muchshe despised lung cancer. She applied to the Department of Motor Vehicles in Texas fora license plate to say IH8 LC, standing for I hate lung cancer. At first she was deniedbecause of the use of the word “hate” which she abbreviated as “H8.” “I was given theopportunity to appeal the ruling and I did. I made a case for why I hated lung cancer andwhy everyone else should hate lung cancer too! It was a three page document outliningmy personal loss, full of statistics and pictures. I was told off the record that it was thefirst time they had ever reversed a denial.”Katie has a remarkable tenacity to spread the word about lung cancer. She says shenever talks about statistics but instead talks about what she knows and her experiences.She said that her goal is always to provide support by directing people where to go forinformation and to give hope to people by highlighting survivors and their stories.
Being a lung cancer advocate full-time can be taxing so we asked Katie how she avoidsadvocacy burnout and what her advice would be to someone who wants to dosomething small to get involved, but not do advocacy full-time.LungCAN: What would you recommend to people so that they don’t experienceadvocacy burnout?Katie Brown: I think you need to always remember what inspired you to become anadvocate. In my case it was my dad and the feeling of helplessness and isolation. I neverwish that feeling on anyone and I promised him that I would help others like us.It can be easy to get caught up in the logistics and bureaucracy of advocating for a causeor goal. It can also be discouraging at time with many roadblocks and obstacles.Remember who you’re fighting for and why this cause is so important to you.It’s also important to balance your life with successes and joys that are unrelated toyour cause. Take mental breaks from advocacy and have adventures or hobbies if youcan.LungCAN: What one small thing could people do to help advocate for the cause?Katie Brown: The easiest thing to do is just talk about lung cancer as often as you can.Tell people about lung cancer and share the facts with them. Dispel any misconceptionsor stigma associated with the disease and let them know that it can affect anyone withlungs and that we need their support and funding.Since Katie was a caregiver herself, and since she talks to both patients and caregiversall day long, we asked her what advice she would give to caregivers who just found out aloved one had been diagnosed with lung cancer.LungCAN: What recommendation would you give to caregivers who have just foundout a loved one has been diagnosed?Katie Brown: There are so many things to consider, but if I had to make a list, here’swhat I’d say: 1. Make lists. Getting the news that someone you love has lung cancer is so overwhelming. Most of the time loved ones are thrown into the role of caregiver without previous experience or training. Lists help you tackle the things that have to be done one at a time so that you aren’t so overwhelmed.