How could I have cancer? Did I cause this? Why is this happening to me? How do I stop my friends and family from tanning knowing what I know now?
We know the feeling. Melanoma rates are increasing, and not just in the sunny states. Until you or a loved one have had melanoma, it's difficult to understand its impact. Even if caught at an early stage, the disease doesn’t end there. Life is different. Sunny days can cause anxiety. Every new mole is cause for concern. Routine medical care now includes regular skin checks and possible new biopsies. Your body has new scars.
As a survivor-run organization, we understand that melanoma is more than just skin cancer. We understand. We care. We've been there. And we are doing something about it.
SolSurvivors is network of melanoma survivors, family, and friends who are passionate about melanoma prevention and early detection. We coordinate community events to educate patients and their families, advocate for sun safety, and are working closely with researchers at Oregon Health & Science University to wage a War on Melanoma.
Together, we can overcome melanoma.
SolSurvivors is a network of survivors, friends and family who are passionate about melanoma prevention and early detection. We are a volunteer-run nonprofit organization that strives to:
- Connect melanoma patients to resources and events in their local communities
- Provide opportunities for melanoma patients, family members, friends, and other supporters to become active as educators in their communities
- Bridge the gap between patients and the health care system by actively involving patients in the design of melanoma research
In September of 2011, a group of melanoma patients, friends, caregivers, and family members attended a Melanoma Symposium at the Huntsman Cancer Institute in Salt Lake City. The Symposium had been organized by MaryAnn Gerber and Dr. Sancy Leachman. After a very informative presentation from doctors, patients, survivors, family survivors, the question was asked of the audience, “Who wants to help in the efforts of a patient advocacy group?”
The founders of SolSurvivors—MaryAnn Gerber, Sancy Leachman, and Bob Weir--quickly became involved in supporting the Utah Tanning Bill legislation to restrict and limit the use of commercial tanning beds by Utah’s youth. Testimonies from physicians, public officials, and melanoma survivors were given in both Utah Senate and House committee hearings to advance their bill to passage. During this time, MaryAnn, Dr. Leachman, Dr. Robert Andtbacka, Melissa Shepherd, and many others gave media interviews promoting skin cancer awareness and the dangers of tanning. MaryAnn even went undercover to expose the lack of tanning salon employee education as to the dangers and procedures to be followed regarding indoor tanning. In 2012, SolSurvivors officially became a non-profit and was granted federal tax exempt status.
Most recently, SolSurvivors expanded to Oregon under the leadership of Katie Wilkes. In early 2014, Katie and SolSurvivors received funding from the Patient-Centered Outcomes Research Institute to increase patient involvement in the design, governance, and dissemination of melanoma research. SolSurvivors is actively engaged in their third year of this project, working with researchers to improve how melanoma is prevented and detected.
What We've Achieved
Since 2012, SolSurvivors has been involved in a variety of activities and initiatives, including:
- Providing volunteers for cancer outreach programs
- Giving educational seminars on the dangers of tanning
- Organizing patient focus groups and panel discussions
- Partnering with a university to host a patient symposium
- Received an award from the Patient-Centered Outcomes Research Institute to collaborate on patient-centered melanoma research