Voices on Cancer is an award-winning Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Valerie Guild is President of AIM at Melanoma, an international melanoma foundation engaged and invested in advancing melanoma care through innovative research, legislative reform, education, and patient and caregiver support. Valerie began working in melanoma advocacy in 2003 after the death of her daughter, Charlie, at the age of 26, from melanoma.
My advocacy story
In 2003, my daughter, Charlie, lived and worked in San Francisco, packing 26 hours into each 24-hour day. A recent Brown University graduate with plans to go to medical school, Charlie’s life was full of promise and possibility. From the outside, she appeared healthy and full of life, as most 25-year-olds do. So, her stage IV melanoma diagnosis was unexpected, to say the least.
Although we learned that stage IV patients, at the time, lived an average of 9 months after diagnosis, we were initially hopeful. If anyone could beat the odds, it was Charlie. She was determined to fight the disease with the same intensity with which she lived.
It was my responsibility to get her the best treatment available and give her the emotional support she needed, but information for people with melanoma and their caregivers was lacking. Getting the answers and support we needed was difficult, and, in some cases, the information simply didn’t exist.
In November 2003, 9 months after her diagnosis, Charlie died of melanoma. My daughter fought her cancer with grace and humility, courage and dignity.
To honor her and to continue her fight, I established the Charlie Guild Melanoma Foundation, which is now AIM at Melanoma. We have an admittedly ambitious plan: fund groundbreaking research to find the cure for melanoma; advocate for melanoma patients, during and after treatment; and provide information and resources to the melanoma community.
AIM’s website is filled with critical resources that weren’t previously available—everything from a melanoma specialist locator and a clinical trial matching service to an on-call melanoma nurse and live-streamed melanoma symposiums. I’m also extremely proud to say that AIM’s 3 paradigm-shifting research projects are poised to make significant progress toward finding the cure. Defeating the cancer that took my daughter’s life is now my life’s work.
Honoring a loved one through advocacy
Advocacy can be a fulfilling way to honor a loved one and to keep his or her memory alive. And you don’t have to start a foundation. There are many different ways that you can provide hope and support to individuals affected by cancer. Here are a few ideas and tips to consider:
Help get much-needed resources to patients and their loved ones. Frustration about the lack of resources for people whose lives are impacted by melanoma drove me to establish the Foundation, and especially, AIM’s website. Contact a cancer organization that you’d like to support to ask about ways you can help share the latest information regarding prevention, diagnosis, treatment, and survivorship.
Represent your loved one at the decision-making table. I felt that at the time of Charlie’s illness that melanoma patients as a group lacked a strong and respected voice—an advocacy organization with a seat at the table when drugs are approved, legislation is drafted, and research is reviewed. AIM became that voice. You can make your voice heard, too. Many organizations provide advocacy training that can teach you how to work with pharmaceutical companies, medical boards, and government agencies to help advise them on critical topics that affect patients and families dealing with cancer.
Raise funds for research. The worst part of Charlie’s cancer diagnosis was learning that there simply wasn’t any viable treatment for her in 2003. After she died, I immersed myself in the world of melanoma research and vowed that AIM would fund cutting-edge research so that we could soon live in a world where no other family suffered as we did. Research is the key to the cure for any cancer. Consider planning or participating in local or national fundraisers that support groundbreaking clinical research initiatives.
Don’t let pressure take over purpose. There are tremendous benefits to my work honoring Charlie. She most definitely “lives on” through AIM, and I enjoy spending my days paying tribute to her. But the pressure to succeed is more than personal; like my love for her, it’s visceral and innate. For example, if AIM fails, have I failed Charlie? Can I ever leave AIM, or will I leave Charlie by doing so? I struggle with these questions periodically, but I know she’ll guide me. Let your loved one do the same for you on your advocacy journey, knowing they want you to be happy and healthy along the way. Don’t let advocacy burnout take over.