Megan was diagnosed with a desmoid tumor in 2023. She had a previous diagnosis from 2020 of Hodgkin’s Lymphoma, so was familiar with being an oncology patient, but the rarity of desmoid tumors came with a new set of obstacles. Megan was first introduced to DTRF at a patient-led fundraiser, and she began being actively involved with DTRF after the Together We Will weekend in 2025. She jumped right into peer-2-peer fundraising and hosting local fundraising events. In December of 2025, Megan joined the DTRF Ambassador program to help bring purpose to her desmoid tumor journey.

She has her Bachelors of Science in Clinical Exercise Science from Grand Valley State University and has 5 years of experience in the medical field, 5 years of experience in the fitness world, and has been involved with volunteering throughout her life. Megan is very passionate about the non-profit space and serving communities, with experience being a Vice President of a small non-profit and a founder of a first year girl’s rugby team. Throughout the years, she has gained skills in advocacy, fundraising, project leading, event planning, and coaching. 

There are so many things out of our control as desmoid tumor patients, but one thing that is in our control is using our voices to help spread awareness and be an advocate. This is something that is at the heart of Megan’s drive to help serve DTRF and the desmoid community.

Megan lives in west Michigan and enjoys spending her time with her parents and four younger siblings. She enjoys being close to the lakeshore to enjoy Lake Michigan sunsets and is an avid reader.

Katie first connected with the DTRF within a week of her own desmoid tumor diagnosis in 2023. Since that moment, the Foundation has been a beacon of light for her. That personal connection fuels her deep commitment to advancing DTRF’s mission to find a cure for desmoid tumors and improve the lives of patients.

Katie brings over 20 years of nonprofit leadership experience, including service as an executive director, board member, and founder of organizations in the U.S. and Latin America. She is skilled in strategy design, fundraising, team development, and building organizational systems that promote sustainability and impact. Known for her creative and mindful leadership style, Katie draws on practices of deep listening, collaboration, and courage to strengthen the communities and causes she serves.

She holds a master’s degree in Contemplative Education from Naropa University and a bachelor’s degree in Communications and Spanish from the College of Wooster.

Originally from Pennsylvania, Katie has called Colorado home for over 25 years where she lives with her husband, Bryan, and two incredible sons, Phineas and Leo. Katie enjoys reading, cooking, and spending time with family and friends. She is also a passionate traveler with deep ties to Mexico and Guatemala, and is always ready for a conversation about books, civic engagement, or her favorite Peloton workouts.

Born and raised in California, Pearl earned her degree in Applied Arts and Sciences with an emphasis in Kinesiology from San Diego State University.

Pearl brings over a decade of experience in the healthcare industry, having worked directly with patients at a physical therapy clinic that specializes in pelvic floor diagnoses as well as in a variety of healthcare management roles, including lead front desk and aide team, managing data entry and analysis, and credentialing travel nurses. Her career spans community-based nonprofit programs, clinical operations, and cross-functional team development—consistently centered on advocacy, support, and operational excellence.

In addition to her professional experience, Pearl is also a dedicated Martial Arts and Polynesian dance instructor, reflecting her passion for cultural education, movement, and mentorship. Outside of work, she enjoys traveling, making music, spending time with family and friends, and caring for her dogs.

Pearl is honored to contribute to DTRF’s mission and is committed to leveraging her experience to support the foundation’s operations and advocate on behalf of the desmoid tumor community.

Chaney is an experienced Communications Manager with a passion for storytelling marketing and innovative content. She has experience working with nonprofits to increase mission awareness, promote connectedness, and cultivate community through a variety of digital channels.

She graduated from the University of Georgia with a masters degree in public health with an emphasis in health promotion. Early in her career, she combined her experience in health and wellness program planning with her creative skills in graphic design and photography.

Chaney currently lives in Colorado with her husband and two daughters. When she is not working, Chaney can be found hiking with her family, horseback riding or planning travel adventures with family and friends.

Amanda Lucas is a dedicated patient advocate and research associate with the Desmoid Tumor Research Foundation (DTRF), as well as a clinical research project manager based in Jacksonville Beach, Florida. Her passion lies in serving the desmoid tumor community and addressing the needs of patients with serious, unmet medical challenges.

Amanda is a graduate of Clemson University with a B.S. in Biological Sciences and was chosen in 2008 to participate in the Alta Bates Oncology Preceptorship in Berkeley CA. Now, she has more than 13 years of clinical research experience primarily in the early phase development of assets, including large and small molecules, across various therapeutic areas.

Dr. Mrinal Gounder is the Scientific Director of DTRF and a member of the Medical and Scientific Advisory Boards. He is a medical oncologist at MSKCC specializing in sarcomas and developing new drugs in cancer and specializes in desmoid tumors. He is an internationally recognized leader in desmoid tumors and has lead numerous clinical trials in desmoid tumors. He led the phase 3, international studies of sorafenib and nirogacestat in desmoid tumors. In collaboration with DTRF,MSKCC and IQVIA, he developed the GODDESS patient reported outcomes tool – the first of its kind to evaluate the experience of patients with desmoid tumors.