The Desmoid Project

Creating a roadmap for an empowered desmoid community

Programs & Resources

Needs Assessment Survey: As part of our commitment to serving the desmoid community, we are conducting a needs assessment to better understand the challenges and concerns faced by patients. Your feedback will be invaluable in shaping the programs and services we offer. Have your voice heard and fill out our needs assessment survey today!

Support Group Series: Our second support group series begins on July 24th and runs through September 18th. Led by Licensed Clinical Social Worker and desmoid patient Ashley Williams, and Credentialed Advocate and desmoid patient Dana Lawson. This group will provide a safe space for desmoid patients to connect, share, and support each other through their journeys, while learning how this diagnosis can affect your mental health. We will focus on learning resiliency tools to help manage the psychological distress of desmoid tumors. If you’re interested in joining us in this support group or a future support group, please fill out our interest form to reserve your spot. There will be a limited number of spaces available.

Desmoid Patient Retreat: We are thrilled to announce a special retreat designed exclusively for desmoid patients. This retreat, located in Olympic National Park, Port Angeles, WA, is created by patients, for patients. Because we personally know how much this disease has already taken from you, we are offering this at NO COST – including a stipend up to $750 for your transportation! We only have room for 12 patients so you will need to fill out our interest form to begin the reservation process.

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Mission

To enhance the quality of life for desmoid tumor patients, their families, and caregivers through comprehensive support and advocacy by creating a roadmap, developing resiliency tools, increasing knowledge, and empowering patients to navigate and thrive with this rare disease.

Core values

  • Empathy and Compassion
  • Cultivating Strength Through Connection
  • Patient-Centered Approach
  • Continual Learning and Growth
  • Trauma Informed

About Us

Our passion for helping patients navigate the journey inspired us to start The Desmoid Project. Founded for patients, by patients, this organization’s goals in the first two years include determining the unmet needs of our community, providing education, launching a support group series, and developing a roadmap for navigating the healthcare and insurance systems. The board of directors is comprised of Dana Lawson, DeAnn Sorensen, Ashley Williams, and Kelly Cuvar. The board has nearly 100 years of combined experience as desmoid tumor patients, along with decades of experience in nonprofit management, mental health services, patient advocacy, and fundraising. This unique position permits the organization to have an in depth understanding of the challenges a desmoid tumor patient faces and to possess the robust tools to assist with resolving these challenges to improve their quality of life.

Our Team

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