Community Engagement Committee
The SolSurvivors Community Engagement Committee, a joint initiative between SolSurvivors Oregon and the OHSU War on Melanoma,was created to ensure that the patient and caregiver perspective is taken into consideration for melanoma research and community outreach initiatives, especially those related to the OHSU War on Melanoma through the Melanoma Community Registry.
Katie Wilkes, Committee Chair
Katie Wilkes became involved in melanoma prevention after being diagnosed at age 23. Her blog, PrettyinPale.org, chronicles what it's like to be a young adult melanoma survivor learning how to love the skin you're born in. Katie has testified at the Oregon State legislature in support of a stronger regulations for tanning beds, has served as volunteer chair of the Portland Melanoma Walk, and most recently founded and became chair of the SolSurvivors Community Engagement Committee.
Katie is director of an award from the Patient-Centered Outcomes Research Institute (PCORI) that aims to involve melanoma patients and their loved ones in the design of melanoma research. During the workday, Katie does community relations for the OHSU Knight Cancer Institute, and is very grateful to have a job that gives her the flexibility to do all of the above!
When she’s not working, Katie loves traveling, reading, running, and spending time with her adorable nephew. Her guiltiest pleasure is binge-watching TV shows on Netflix or Hulu.
Robin Zimmerman, Co-Chair of Events
Robin married his high school sweetheart Bonnie a year after graduating from Roosevelt High School. They had two children together, Steven in 1985 and JoHanna in 1996, and moved to the quiet town of Lafayette to raise their family in 1998. In August of 2004, Bonnie was diagnosed with melanoma. At the time, they thought “at least it is only skin cancer.” As the cancer spread, they got a very quick education of its seriousness. Unfortunately Bonnie lost her battle with melanoma in May of 2008 after fighting the disease for almost four years.
Now retired from years of being a baker, Robin spends his time dedicated to raising awareness in his community along with his children. Robin and his family created their own flyers about the dangers of melanoma and each May they post them throughout Yamhill County. Through his own experience dealing with grief, Robin was able to work with local lawmakers and get legislation passed to help those who lose a family member be able to take time off to grieve.
Robin has learned one truth in his life: change does not happen suddenly but comes through consistent pressure. Whether raising a child, passing legislation, or changing an attitude, it all gets down to getting the message out repeatedly.
If robin could have one superpower, what would it be? Robin feels that he already has a superpower-the ability to Nag. Just add a cape and Robin is ready to go!
CathY Law, Co-Chair of outreach
Cathy became a melanoma survivor eight years ago after a biopsy revealed a very small mole was not only malignant but had already grown under the skin. This was a shock and a life-changing event, after years of successful preventative trips to the dermatologist to find pre-cancerous moles before it progressed. After several more early-stage catches and other serious health issues after the ensuing surgeries, Cathy learned quickly that vigilance was only part of her journey and began the process of learning to make the best of one’s life’s circumstances despite the challenges. Joining and working with the SolSurvivors Oregon Community Engagement Committee is one way she has found to help her feel like she is making a difference in the fight against melanoma for herself, her teen son and other blood relatives who share her DNA, and others who have also suffered from this disease.
Cathy’s hobbies include traveling with her husband and two children (13-year-old son and 9-year-old daughter), doing yoga, swimming, wine tasting, and loving her pets.
If she had a super power it would be to bring about world peace through mutual respect for our differences, appreciation of diversity, and a conscious effort toward achieving equity.
Jennifer Millar, Co-Chair of marketing and community education
While living in Southern Oregon, Jennifer started occasionally indoor tanning her junior year of high school. This was common practice among her friends and it seemed safer than getting burned tanning outside. Unfortunately, at the age of 21, she was diagnosed with melanoma. In the years since then and despite being very careful, she has struggled with several more instances of melanoma. Her dermatologist attributes this to the indoor tanning exposure she received more than a decade before. Wanting to get the word out to young people before they started ever tanning, Jennifer became involved with Sol Survivors. She has a strong desire to change the perception of what is considered “healthy” looking and help people to feel confident in their natural shade.
Jennifer has her BA in Business Administration from George Fox University and is currently getting her Healthcare MBA from OHSU/PSU. Jennifer enjoys kayaking and stand up paddle boarding (with loads of sunscreen and UPF gear!), traveling, and the fine microbrews of the northwest. She loves baking and her guilty pleasure includes her own original chocolate chip cookie recipe. She lives with her husband and large fluffy dog in West Linn, Oregon.
Pam Beck, Co-Chair of Research Advocacy
Pam’s personal journey with cancer began almost 10 years ago when a routine Mammogram in August of 2006, showed a suspicious area. This began the adventure that would be life changing. First issue was to remove and treat the cancer. Surgeries, chemo, radiation and a feeling that life had more to offer were just the first leg of the journey. Beside her on this journey were Pam’s husband, Matt and son Marty, who was 12 years old at this time. There was a realization that support services for her family were lacking. How do you help a 12-year-old boy just starting middle school, or help your husband while all you could do was continue to endure treatments? As Pam and her family saw it, 10 years ago there were not many services readily available.
With treatments over and learning to live as a cancer survivor, Pam’s desire to fill what she and her family saw as a void of services, the next part of the journey commenced. Pam enrolled in an Adult Completion Program at George Fox University to finish her Bachelors degree, graduating in December 2009 with a BA in Social and Behavior Studies. Pam continued her education, taking 5 years to complete her Master’s degree in Marriage and Family Therapy in May 2015, also from George Fox University. Pam is now a MFT Intern, registered with the State of Oregon, and is providing counseling to individuals, families and couples. While working full time in the Printing industry, going to school, being involved with her son in Boy Scouts, Pam started to volunteer at Providence St. Vincent’s Hospital in their Breast Cancer Outreach program (BCOP), where survivors are paired up to be a support person for someone newly diagnosed with Breast Cancer.
In early 2013, Pam became aware of another volunteer opportunity that was opening up at the OHSU Knight Cancer Institute. The newly form group of 10 volunteers became Scientific Research Advocates. Working with Researchers on Grants, helping to write lay summaries that might be better understood, and bringing the voice of the patients to researchers who might not otherwise have the opportunity to connect with a cancer patient. The group has branched out to many different cancers, and that is how Pam became connected with Melanoma and Skin Cancer. Pam says, “I still have so much to learn about it.”
When she isn’t working, or volunteering, Pam enjoys being at home with her family, working in the garden, or standing in a slow moving river fishing.
If Pam could have a superpower, it would be the ability of speed/time. Speed up and finish the work stuff, so there would be more time to enjoy the fun things in life.
Mary Pat Berry, Co-Chair of Research Advocacy
Mary Pat Berry has been delighted to be part of the SolSurvivors effort since Spring 2015. While not a melanoma survivor, a Mohs procedure for basal cell carcinoma during one of her breast cancer treatment periods has made her vigilant and sparked interest in gaining knowledge beyond breast cancer.
After a second cancer diagnosis, Mary Pat decided to be take action as a patient partner for cancer research and to bring actionable information to the community. She became a OHSU Knight Cancer Institute Scientific Research Advocate in 2013. Her background in nonprofit leadership and experience owning commercial property provided some skills but her other passions for for books, art and music come mostly from efforts as a reading specialist and community volunteer.
Mary Pat's guilty pleasure certainly has to be shared time at one of her three book clubs with interesting conversation over lunch or an evening glass of wine.
Stephanie Heilman, Co-Chair of Events
Stephanie Heilman was reluctantly inspecting the toll her second pregnancy had taken on her skin when she decided to visit a dermatologist for advice. What she learned that visit would change her life forever, as a "funny" shaped mole on her leg was biopsied and ultimately diagnosed as stage 1 melanoma. Before she knew what hit her, she was carrying her five-week old baby to the dermatologist for the first of her three excisions.
Like most when first diagnosed, Stephanie didn't know much about melanoma. As she learned more about the disease, she realized how serious melanoma can be. She wanted to help people learn about melanoma before others were in a same, or worse, situation.
The same year she was diagnosed, she reached out to AIM at Melanoma, a non-profit that coordinates walks around the country to raise funds and awareness for skin cancer. This resulted in her partnering to organize the Northwest Melanoma 5k Walk and Fun Run, which has raised nearly $100,000 for the Melanoma Tissue Bank Consortium at the OHSU Knight Cancer Institute!
Stephanie is a self-employed Data Analyst, avid runner, half-marathon pacer for several local race coordinators and volunteers her child's Elementary School Running club. If Stephanie had a super power it would be to freeze time so her kids would be little forever.
Gale Pudlitzke, Chair of business management
Gale grew up on and in the lakes of Minnesota. Summers were spent either in the lake swimming or boating. In the winter there was ice skating, skiing and snowmobiling – albeit with much less skin exposed. This was a time when sunscreen was rarely used and of little concern for a brunette who tans easily.
Fast forward several years, now living in Denver, Colorado, enjoying the summer hiking and biking, she discovered a mole that seemed to change every day. Her suspicions were confirmed, it was melanoma. After a whirlwind of exams and surgery she was left with the question “now what?”. Google didn’t exist yet, she didn’t know anyone else with melanoma, information in the library was limited, and you had to wait weeks to get someone to send information. Some said “it’s just skin cancer’ and didn’t believe it was deadly. Besides avoiding the sun from 10 to 2 and wearing sunscreen how do you resume a life that includes the outdoors and sunshine?
Gale became involved with SolSurvivors to meet to other folks with melanoma, keep abreast of research, and help spread the word and offer support to others affected by melanoma.
Gale’s hobbies are hiking, reading, traveling and art and craft projects. If she had a super power it would be omnilinguilism or at least add to my Finnish vocabulary.
Laurie Terrell, Co-Chair of Outreach
Laurie chose to become involved with SolSurvivors after meeting Katie Wilkes at an OHSU War on Melanoma event in spring 2015. She was excited to learn there was an opportunity to become actively involved with melanoma survivors in addressing education, prevention and personal involvement in treatment.
Laurie was diagnosed with melanoma in 2013. Like so many others, she thought, "Oh, skin cancer. I'll just have it removed and be on my way. Maybe I'll be a little more vigilant about skin protection." She was shocked when she did some research and learned that the survival rate for metastatic melanoma was one of the lowest of all cancers. Laurie is also a thyroid cancer survivor, which has one of the highest survival rates. She feels she was fortunate that my mole on her shoulder had been easy to see. After two excisions to assure that all of the cancer was contained, she was melanoma free.
Within the next year, Laurie's son and her brother were also diagnosed with melanoma. Despite the recommendations of a primary care physician, her son had ignored his pale, but large mole for two years. It wasn't until his brother warned him he could die, that he finally went to a dermatologist. Laurie's brother (who has had several squamous and basal cell moles removed [he's fair with red hair]) had shown a new questionable mole to his doctor the year before. The PCP did not believe it to be suspicious. The next year her brother insisted it be biopsied and it was positive for melanoma. A close friend's boss had also recently died because of a misdiagnosis.
Laurie says her family was lucky that none of them had metastatic melanoma. However, she remains concerned about young people who don't understand the risks and seriousness of skin cancers. She feels a strong responsibility to educate parents and youth about risks, prevention, detection and consultation with a medical professional. She is equally concerned about misdiagnosis and the complications that led to personal and professional "misses" of suspicious moles.
"It's been rewarding to be a part of a team of survivors that are striving to change these challenges," she said.
If Laurie could be a superhero, she'd be Superwoman with the power to heal the physical and emotional pain for children.
Bio coming soon!