Advocates in Action: Katie Brown


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Advocates in Action: Katie Brown

  1. 1. 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
  2. 2. 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.
  3. 3. 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.
  4. 4. 2. Ask questions. One way to quiet the fears and uncertainty is to know what you’re dealing with. Ask about the treatment plan, medications, side effects, and anything else that the doctor may not have covered completely. 3. Do your research. Connect with qualified medical professionals to get their opinions and credible online resources like Ask the Experts. 4. Clinical Trials. Check into see which clinical trials may be available. 5. Build your support system. Check locally for lung cancer support groups and resources. LUNGevity offers a peer-to-peer support buddy matching program called LifeLine and the ability to create a CaringBridge page to alert friends and family of medical updates. You can also visit LungCAN for online support resources. 6. Communicate. Throughout the lung cancer experience this is a recurring theme, but it’s important to communicate your feelings to your loved one and have them communicate their feelings to you. Set expectations and limitations and seek professional help if needed. 7. Ask for help. Those around you want to help. Let them. Build a meal train, schedule chores and tasks for others that will help lighten the load around the house. Have family and friends rotate visits and accompany the patient to treatments. 8. Be gentle on yourself. Caregivers tend to take everything on themselves, internalize their fears and feelings and neglect their own health and wellness. Take time for yourself. Take “cancer breaks”, find a moment to vent and laugh with a friend and do the things you normally do as often as you can. Your loved one never wanted this to happen and worries about you too.To get in touch with Katie and keep up with her lung canceradvocacy activities you can connect with her on Facebook, Twitter,her blogs, or on the LUNGevity website. Katie on Facebook: Katie on Twitter: Katie’s blogs: o LUNGevity blog - o EmpowHer - LUNGevity Link Up -©2012 Lung Cancer Action Network. All Rights Reserved.