Corvallis melanoma walk raises $1,135 for research

By Cathy Law
SolSurvivors Oregon, Community Engagement Committee Member

On May 22, 2016, Cathy Law, a member of the SolSurvivors Community Engagement Committee, hosted the first AIM at Melanoma Walk/Run in Corvallis, Oregon. This was a companion event to the OHSU War on Skin Cancer Event and the AIM at Melanoma Walk in Portland during the same weekend. $1,135 was raised from this event! One hundred percent of net proceeds were given to the melanoma tissue bank at the OHSU Knight Cancer Institute. OHSU Knight Cancer Institute is one of four leading melanoma research centers in the U.S. that have laid the groundwork for a tissue bank consortium, which will provide the most basic of tools – primary tissue to be used in research.

This first annual Corvallis Melanoma Walk/Run offers folks who live in the Corvallis area the opportunity to seek out support and education locally. The organizers hope to grow the event each year, as well as to use it as a template for other smaller communities that also want to develop their own local event. If you are interested in starting a walk/run in your town and would like some support doing so, please contact Cathy Law.

Thank you to everyone who came out to join us at the Corvallis AIM at Melanoma Walk/Run and thank you to those who donated to the cause!

Portland-based patient group receives $50,000 to partner with researchers on melanoma study

A team of community members and researchers, led by Katie Wilkes, founder of SolSurvivors Oregon, has been selected to receive $50,000 from the Patient-Centered Outcomes Research Institute (PCORI) to develop a research study that reflects the needs and interests of melanoma patients and their families.

The award comes from PCORI’s Pipeline to Proposal program, which enables individuals and groups who are not typically involved in the scientific research process to develop partnerships with researchers and spearhead the design of a patient-centered research proposal. Previously, SolSurvivors received $40,000 to build a Community Engagement Committee and support the OHSU Department of Dermatology on engagement activities related to the Melanoma Community Registry.

“When something like melanoma touches your life, you realize that if you’re not spending at least part of your time making a difference, you are wasting the life you are given,” said Robin Zimmerman, a member of the project team who became involved with SolSurvivors after losing his wife to melanoma in 2008.

Last fall, the project team jointly hosted a Melanoma Community Research Forum, where over 90 participants gathered in Portland and Bend to learn about the latest melanoma research and participate in small-group discussions about their experience with melanoma. Themes identified during the event are being used to shape a collaborative research project, as well as a community event to be held in November 2016.

For more information, please contact info@solsurvivorsusa.org.


About SolSurvivors Oregon 
SolSurvivors Oregon is a network of melanoma survivors, family, and friends who are passionate about transforming the way we prevent, diagnose, and treat melanoma. We coordinate community events to educate patients and their families, advocate for sun safety, and are working closely with researchers at OHSU to wage a War on Melanoma.

About PCORI 
PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.

Supplemental materials

• View the project abstract 
• Watch a video about the project 

Recap: 2016 War on Skin Cancer Event

By Gale Pudlitzke
SolSurvivors Oregon, Community Engagement Committee Member

This past Saturday, May 21, SolSurvivors had the pleasure of participating in the OHSU War on Skin Cancer Event. How great it was to see all the survivors, family and friends there to support this cause. There was something for everyone --- a 5k walk/run, lectures, skin screening, blood and saliva donation for research, tables manned by researchers sharing new tools and information. And of course, the large gathering of beautiful redheads.

At the SolSurvivors table, we had the pleasure of talking to many melanoma survivors and family members who shared with us the age that they or their relative was diagnosed with melanoma. We plotted this information on a large display denoting the age, sex and survival of each. As we gathered more information, our graph showed some interesting results that lead to some great discussions with our visitors. We hope to travel with the display to different events this summer and see if our results change at all and of course, continue the conversations.

We thank everyone who stopped by our table. The stories your shared, information you provided and questions that you asked will help us move forward in strengthening our mission of making connections and providing support to melanoma survivors and their families and friends.

View more photos from the event on our Facebook page and don't forget to RSVP for our upcoming Melanoma Meetup on Sunday, June 12.

Themes and potential research questions identified at the 2015 Melanoma Community Research Forum

In November 2015, over 90 participants gathered in Portland and Bend, Ore., to attend SolSurvivors' first Melanoma Community Research Forum. After presentations by researchers on the latest in melanoma prevention and treatment, attendees were invited to join small-group discussions facilitated by trained volunteers. In the small group discussions, participants were asked questions such as: “If you had five minutes to sit down with a researcher, what would you want them to know about your experience with melanoma?”

Following the forum, members of the SolSurvivors Community Engagement Committee listened to recordings of the small group discussions and drafted summaries of themes. In early January, each committee member shared his or her summaries while our project coordinator wrote up themes on a virtual white board. Themes that came up more than once were highlighted, and we finished our meeting by discussing potential research questions that might address issues raised in the discussions.

Themes that we identified as issues of importance for attendees of our research forum in November include:

• Frustration with lack of public knowledge about the seriousness of melanoma 
• Lack of confidence in skin exams being conducted by self or provider 
• Lack of confidence in being able to detect recurrence 
• Missing information, resources, or tools to make informed decisions regarding care 
• Felt rushed during treatment 
• Importance of advocating for yourself, getting second opinions, or bringing a second person to medical appointments 
• Need more resources for emotional support and holistic wellness during and after treatment
• Conflicting information in the community about sun protection and sun safety 
• Desire to see more collaboration between health care providers and systems 

The SolSurvivors Community Engagement Committee shared this list of themes and potential research questions with OHSU researchers in late February. During that meeting, we discussed overlap between our community-identified needs and existing or future OHSU research initiatives. Our Community Engagement Committee plans to continue this discussion with OHSU, and will submit an application for continued funding from the Patient-Centered Outcomes Research Institute to explore possible solutions to the needs our community helped identify. We hope to host a follow-up forum in Fall 2016.

Download a copy of the full report.

Questions or comments? Contact us at info@solsurvivorsusa.org.