Dee Burlile, M.Ed

Dee became involved in scleroderma outreach and advocacy in 2016, after being diagnosed with the illness. Within the scleroderma community she has founded and developed a support group, led a foundation chapter, organized conferences, developed corporate partnerships, facilitated national training seminars, testified on Capitol Hill, and has participated in and authored research studies. Her story has been featured on NBC News, the National Institute of Health MedPlus Magazine, the Advocates Voice, and she was recognized as a “Medical Hero” by the Center for Information and Study on Clinical Research Participation (CISCRP). In 2024, Project Scleroderma in partnership with the Scleroderma Research Foundation filmed a documentary that highlighted Dee's experience with scleroderma and her work on behalf of people with scleroderma. Dee has a bachelor's degree from Boise State University and a master's degree from the University of Idaho. Dee's favorite scleroderma related activity is the annual Scleroderma Outreach Northwest day at the Seattle Mariners ballpark.

Kim Amandus

I grew up in the Midwest and moved to the Seattle area after college in 2003. I have lived most of my life with scleroderma since adolescence and I see the importance in having a community to lean on for support, advocacy and education through the journey of learning your own story with scleroderma as it is never the same.

I am passionate about music, yoga, continuing purposeful movement to stay ahead of the scleroderma and many secondary illnesses. My love for laughter and engagement allows me to connect to others and share my passion and energy in hopes of a safe community for all.

Ken Moninski

Ken Moninski was born and raised in Anchorage, Alaska. His love of airplanes led him to an internship at Northwest Airlines while still in high school. Ken attended college at the University of Alaska-Fairbanks where he worked nights at the airport for a small Alaskan airline.

After graduating with a bachelor's degree in business administration, Ken performed various management roles in flight operations, customer service, finance and marketing with several airlines including MarkAir, Virgin Atlantic Airways, and Evergreen International Airlines.

In 2007, Ken acquired Global Aircraft Services, which continues to provide aviation support services to the aircraft leasing sector and commercial airlines following its sale in 2023. Ken is the current President of Safeair Media, one of the largest print design companies specializing in aircraft passenger safety cards that are used by airlines, corporate jets, and charter operators throughout the world.

Ken was married to his first wife, Daina, for 9-years before she passed in 2004 from complications related to the autoimmune disease scleroderma. He joined the Board of Scleroderma Foundation's Northwest Chapter in 2016 and served as its Treasurer until 2022. Ken also volunteered for three years as a mentor to a Seattle teen through Big Brother Big Sisters of Puget Sound and currently sits on the Airport Roundtable advisory board for King County International Airport (Boeing Field).

Ken resides in Maple Valley, Washington with his wife Stacey, their two daughters, and Wilson, the family dog.

John Blum

John was born in Idaho before being raised in the Chicago area and returning to the Pacific Northwest in the 70s. He received undergraduate degrees in Biology and Business at Eastern Illinois University. He found his passion working with the environment and became a biological consultant in Washington after being awarded his M.S. in Fisheries at the University of Washington. In the late 1990s, John was diagnosed with progressive systemic scleroderma with lung involvement. He has used his diagnosis as a catalyst to learn about his disease and he joined the Board, becoming an advocate to support others with this illness. John lives in Bellingham, WA, and spends much of his time there or with his family at their cabin on the N. Fork Skykomish River near Index, WA, playing guitar, fishing, hiking, or playing in the water.

Trish Buscio

Tricia Buscio currently works at CVS Healthspire Life Science Solutions in research quality and compliance. She holds a registered nurse license in Washington state and has clinical experience primarily in Radiation and Medical Oncology. After obtaining her Masters in Health Administration from the University of Washington Tricia entered the clinical research space as a research coordinator and went on to gain an additional 20 years of research experience in drug, device, and pragmatic clinical trials in start-up medical device industry and in clinic/hospital organizations. Tricia's prior work before joining CVS in 2022 was as the Director of Clinical Research at Kaiser Permanente Washington Health Research Institute. After obtaining a Masters of Science in Law in 2015 Tricia focused her career on regulatory compliance and data privacy aspects of clinical and big data research.

Tricia's engagement in the Scleroderma world began when her brother married an amazing woman who was afflicted with Scleroderma. Tricia participated in multiple Scleroderma fundraisers such as walks and galas over the years. Her sister-in-law passed away in 2004 and Tricia remained engaged in the Scleroderma community. She joined the board in 2022 and welcomes the opportunity to volunteer her time in a great community of friends and Scleroderma super-warriors. Tricia's “why” is carrying on the legacy of her sister-in-law's dedication to support those afflicted with Scleroderma.

Shelley Van Pelt

So, picture this: a registered nurse with a side of Scleroderma, diagnosed in 2009. Yep, that's me, Shelley Van Pelt RN(ret), MSN, CNS. I used to rock a nurse's cap and now I rock a patient's hat too. Life threw me a curveball with Scleroderma, but hey, I'm still swinging!

I may have had to say goodbye to my bed-side nursing career, but I said hello to a whole new world of knowledge about Scleroderma. I found my passion in learning about scleroderma medications, treatments, and lifestyle changes. Plus, I'm a Certified Wholistic Nutritionist and yoga instructor. I believe in being well-rounded!

I look for tips to balance between holistic living and traditional medical treatments for Scleroderma. Goal...is about how to make each day a little brighter and better, one step at a time.

Cheers to a healthier and happier you!