The Desmoid Tumor Research Foundation

Christina Kosyla

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Christina Kosyla is an educator, theatre artist, and accidental rare disease advocate. Her performance and directorial work have been showcased in the Kennedy Center in Washington, D.C., the Edinburgh Festival Fringe in Edinburgh, Scotland, and various jazz festivals in Tuscany.

Since her diagnosis with a desmoid tumor in 2018, she has advocated for rare disease research and patient support through speaking engagements on podcasts, social media, and as the keynote speaker at CancerCon 2020. Christina now works as a Program Coordinator with Cactus Cancer Society, which provides free online creative coping workshops for young adult patients, survivors, and caregivers. She lives in New Jersey with her dog, Daisy.

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John is Senior Procurement Counsel at Johnson & Johnson, a leading global healthcare company. In this role, he specializes in negotiating and reviewing complex corporate agreements for the Pharmaceutical and MedTech marketing sectors. John has been with Johnson & Johnson since 2017 and is located in the Tampa, FL office.

John earned his J.D. from the University of New Hampshire School of Law in 2012 and holds a Certificate in Intellectual Property Law. He completed his undergraduate degree at Boston University, graduating with a B.S. in Business Administration in 2009.

Outside of his professional life, John is a dedicated advocate for those impacted by desmoid tumors. After being diagnosed with this rare condition in 2023, he experienced firsthand the challenges and uncertainties that come with such a diagnosis. Finding support through the Desmoid Tumor Research Foundation (DTRF) has been meaningful for him, and he is committed to assisting the organization in raising awareness and funding for important desmoid tumor research. As a proud Board Member of DTRF, John aims to help address the “unknowns” that desmoid patients and their caregivers face on their journeys.

In his free time, John enjoys spending quality time with his family, traveling (having visited all 50 states in the U.S.), and following Boston sports.

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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.

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Lisa brings a wealth of experience in development, event planning, and community engagement to the Desmoid Tumor Research Foundation board. With a distinguished career spanning nonprofit leadership, fundraising, and marketing, she has dedicated her work to fostering meaningful relationships that drive philanthropic success.

Currently serving as the Assistant Director of Development at Orchard Lake Schools, Lisa oversees fundraising initiatives, alumni engagement, and large-scale event coordination. She has a proven track record of cultivating donor relationships, managing volunteer networks, and collaborating with key stakeholders to support institutional growth.

Prior to her role at Orchard Lake Schools, she held leadership positions in development and event coordination at St. Joseph Church and School, Holy Family Rochester, and Everest Academy. Throughout her career, she has successfully led fundraising campaigns, enhanced donor stewardship programs, and implemented strategic marketing initiatives to advance nonprofit missions.

Beyond her professional achievements, Lisa is a passionate advocate for those affected by Desmoid Tumors. As a patient, she understands the challenges of this rare disease and is dedicated to raising awareness and funding for critical research. She organized Strings of Hope, a singer-songwriter fundraiser that raised over $5,000 for the Desmoid Tumor Research Foundation. Additionally, her school’s hockey team honored her through its Pink in the Rink event, which grossed over $100,000, with the foundation as one of three beneficiaries. Through her expertise in development and relationship-building, she is committed to advancing the foundation’s mission to improve patient outcomes and drive scientific discoveries.

In her spare time, Lisa is an avid kayaker and artist, with several of her pieces featured in local exhibits. She finds inspiration in nature and creativity, using both as a means to connect with her community and support causes close to her heart. Most importantly, she is a devoted wife, mother to three wonderful adult children, and proud Mimi to a beautiful granddaughter who brings endless joy to her life.

Lisa is honored to serve on the Desmoid Tumor Research Foundation board and looks forward to making a meaningful impact in the fight against this disease.

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Jason Ortwerth is currently Division Vice President at Automatic Data Processing, a global human capital management company headquartered in Roseland, NJ, overseeing the Midwest HR Outsourcing Division. He is a proud graduate of The Olin School of Business at Washington University in St. Louis, where he graduated with a Managerial Economics degree and played baseball before achieving an MBA at Webster University.     

Jason started his journey after being diagnosed in 2017. In 2019, he founded Swing for a Cure St Louis, which has raised over $150,000 for the Desmoid Tumor Research Foundation while driving awareness and support for the foundation, patients, and families of those impacted by desmoid tumors. Jason and his wife Katie live in St Louis, MO and are the parents of three daughters.

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Dr. Al-Jazrawe leads the High Throughput Sciences (HTS) platform at the Koch Institute. He develops and applies multiplexed deep-sequencing, functional genomics, high-content imaging and machine learning methods to produce genomically credentialed desmoid tumor cell models and therapeutic vulnerability resources to share with the community.