Tuesday, December 1, 2015

This #GivingTuesday, help fund education for melanoma patients and their families

Just in time for Giving Tuesday, SolSurvivors, our volunteer-operated 501(c)(3) nonprofit organization, accepts donations online via PayPal! Your generous donations help support resources such as:
  • Educational events for melanoma patients and their families, such as the Melanoma Community Research Forum on Nov. 14, 2015 at Oregon Health & Science University
  • Outreach in the community on the dangers of tanning
  • Providing volunteers and supplies for melanoma awareness events
  • Pilot funding for patient-centered melanoma research

Monday, November 2, 2015

Volunteers needed for Melanoma Community Research Forum, Nov. 14


On Saturday, Nov. 14, SolSurvivors Oregon will host a free Melanoma Community Research Forum in collaboration with the OHSU Department of Dermatology. During this half-day forum, participants will learn about family history and melanoma risk as well as recent advances in melanoma treatment. Participants will also have a unique opportunity to participate in small group discussions to share their experiences to help shape future research projects.

View a list of volunteers needed below, or visit our VolunteerSpot page to sign up.

Note-taker 
8:00am - 3:30pm
These volunteers will take notes during the small group discussions following the presentations. We will also have a digital recording device, so you will not be responsible for taking down every word, but it will be helpful to have someone write down themes and ideas or things that might not come across in an audio recording. More information will be provided at a meeting in person or by phone to talk about the details of the event. A volunteer orientation will take place before the start of the event. Hours:8AM-3:30PM
If you are interested or have questions, please contact Elizabeth Stoos at stoos@ohsu.edu or 503-418-9356.

Registration Table 
8:00am - 9:30am
These volunteers will check names off the registration list as attendees arrive, and hand out materials. A volunteer orientation one hour before the event will answer any questions that might come up about the agenda for the day, where refreshments or restrooms are located, etc. Hours: 8AM-9:30AM
If you are interested or have questions, please contact Elizabeth Stoos at stoos@ohsu.edu or 503-418-9356.

Welcoming and Directing 
8:00am - 3:00pm
These volunteers will help direct participants by placing signs in the building before the event, and greeting attendees at the entrance to the parking lot and the entrance to the building. You will still be able to participate, and will only have tasks before the event begins, and during break times. The event will be held at the new OHSU Collaborative Life Sciences Building on the South Waterfront, and since many people have not yet been to this building is can be very helpful to have a person to point them in the right direction. An orientation will start an hour before the event, to give you time to see the area and be familiar with where to direct participants.
 If you are interested or have questions, please contact Elizabeth Stoos at stoos@ohsu.edu or 503-418-9356.

Assistant Event Coordinator 
8:00am - 3:30pm
This volunteer will have an integral role assisting OHSU staff with any number of duties including directing and answering questions from participants, setting up catering, setting up signage, or other tasks that may come up. We are looking for someone who is flexible, energetic, willing to jump into any role and able to hit the ground running! More information will be provided at a pre-event meeting in person or by phone to talk about the details. A volunteer orientation will take place before the start of the event. Hours:8AM-3:30PM
If you are interested or have questions, please contact Elizabeth Stoos at stoos@ohsu.edu or 503-418-9356.

Thursday, October 1, 2015

Save the date: Melanoma Community Research Forum, Nov. 14

Melanoma Community Research Forum 
Saturday, Nov. 14, 2015 from 9 a.m. to 3 p.m. 
Collaborative Life Sciences Building 
2730 S.W. Moody Avenue, Portland, OR  


Registration for this event is now closed. 

About the event
SolSurvivors Oregon, in collaboration with the OHSU Department of Dermatology, will host a free Melanoma Community Research Forum on Nov. 14. During this half-day forum, participants will learn about family history and melanoma risk as well as recent advances in melanoma treatment. Participants will also have a unique opportunity to participate in small group discussions to share their experiences to help shape future research projects.

It's free to participate, but registration is required. Please complete registration by Monday, Nov. 9 to help us plan for the appropriate number of participants. Free parking and lunch are also provided.

Who should attend?
  • Melanoma patients and survivors
  • Family members and friends
  • Community members and health care professionals with an interest in melanoma and other skin cancers
Tentative agenda


9 to 9:30 a.m.
Registration
9:30 to 9:45 a.m.
Welcome and introduction
Sancy Leachman, M.D., Ph.D., Chair of the Department of Dermatology, OHSU
9:45 to 10:30 a.m.
Family history and melanoma
Lisa Aspinwall, Ph.D., Chair of the Department of Psychology at the University of Utah
10:30 to 11:15 a.m.
Melanoma treatment and clinical trials
Matthew Taylor, M.D., Program Director, OHSU Knight Cancer Institute Phase 1 Clinical Trials
11:15 to 11:45 a.m.
Q&A
11:45 to 12:30 p.m.
Lunch
12:30 to 1:00 p.m
Partnering to change the state of melanoma in Oregon: Opportunities for patient-centered outcomes research
Katie Wilkes, Founder- SolSurvivors Oregon
1 to 2 p.m.
Small group discussions
2 to 3 p.m.
Recap and closing remarks

Remote participation options
Thanks to your feedback from previous events, we have planned a remote option for participants in Bend, Oregon. Register for this option to view a live video stream of the presentations and participate in a facilitated group discussion. We will send you more information, including the location.

We will also post a recording of the presentations from each researcher on our website for anyone who is unable to attend.

Contact us
If you are interested in volunteering or learning more, please contact info@solsurvivorsusa.org. We will respond to your inquiry within 48 hours.

Wednesday, May 27, 2015

Portland Skin Cancer Research Expo and Melanoma Walk, May 30


There are two great opportunities to get involved and support melanoma research at this weekend's Aim at Melanoma Walk and OHSU Skin Cancer Research Expo taking place all day Saturday, May 30 at the South Waterfront in Portland, Oregon.

What: Sun safety education, free skin checks, opportunities to participate in melanoma research studies, and a free community walk!
When: Saturday, May 30, 2015. Skin Cancer Research Expo takes place from 10 a.m. to 3 p.m.; Melanoma Walk registration opens at 2 p.m. and opening ceremonies kick off at 3 p.m.
Where: Skin Cancer Research Expo takes place at the OHSU Center for Health and Healing, 3303 SW Bond Avenue; Melanoma Walk takes place right across the street at Elizabeth Caruthers Park, 3508 SW Moody Avenue.

Both events are FREE and open to the public. Look for SolSurvivors' exhibit on Patient-Centered Outcomes Research, and be sure to stop by and say hello!

Monday, March 30, 2015

SolSurvivors approved for PCORI funding to advance patient involvement in melanoma research design

Great news to share! SolSurvivors is one of 27 organizations that has been selected to advance to Tier 2 of the Pipeline to Proposals Program, which is run by the Patient-Centered Outcomes Research Institute (PCORI).

Pipeline to Proposal Awards enable individuals and groups that are not typically involved in research to develop the means to produce community-led funding proposals focused on patient-centered comparative effectiveness research (CER). In 2014, SolSurvivors was part of the inaugural Tier 1 cohort of this program. Tier 2 awards provide up to $25,000 per project to help recipients strengthen their community partnerships, develop research capacity, and hone a CER question that could become the basis of a large-scale research project.

Our project, "Developing Infrastructure for Patient-Centered Melanoma Research," involved patients and other critical stakeholders in developing strategies for preventing and detecting melanoma at an earlier stage, thereby decreasing death rates. When melanomas are detected early, patients have a 98% five year survival rate, but if the cancer has spead to the lymph nodes and other parts of the body, survival rates drop to a mere 16.1%. Because of its origins in the skin—where doctors and patients can see it—melanoma should be one of the most easily recognized and detectable of all cancers. Unfortunately, barriers still exist to early detection of melanoma. During Tier 1, we learned that many patients don’t know what to look for when conducting a skin self-exam. Other barriers to early detection and treatment may include a lack of knowledge that melanoma can be life-threatening, poor/no insurance coverage, lack of transportation/distance to a provider, and treatment by a doctor that lacked expertise in melanoma.

The primary goal during Tier 1 award was to begin building an “army” to attack melanoma prevention from new angles and perspectives. Our greatest accomplishment during the nine-month award period was to support the launch of the Melanoma Community Registry at Oregon Health & Science University. As of January 2015, the Melanoma Community Registry had signed up 2,374 patients, 446 family members of patients, and 146 friends of patients. Patients contributed to the creation of this registry by participating in brainstorming meetings, drafting text for recruitment materials, reviewing informed consent language, appearing in TV and newspaper articles promoting the registry, promoting the registry at community events such as the Portland Melanoma Walk, and cost-sharing IT development.

In this next phase, we plan to build upon the progress we made in Tier 1, with the ultimate goal of working toward a large-scale research study in collaboration with researchers at OHSU. Specifically, we plan to use surveys and focus groups to identify issues that are the most crucial to melanoma patients and those who care for them. We are also continuing to develop our network and would love to meet others with an interest in contributing to this effort. Want to get involved? Send us a note at info@solsurvivorsusa.org.

View this video to learn more:


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.