Our Team

David received his BA from Cornell University & his MA from NYU’s Interactive Telecommunications Program (ITP). David has been on the cutting edge of Internet technology since the early 90s and specializes in designing and building complex digital systems that create efficiencies and better outcomes to their traditional analog counterparts. A few years ago, David personally experienced how inefficient and antiquated emotional support delivery is in the United States. David's goal is to eliminate ALL barriers to professional emotional support including cost, scheduling, stigma and make FREE high quality impactful emotional support easily accessible to EVERY rare disease family regardless of location, education, income or access to medical professionals. Somebody To Talk To is the culmination of two and half years of development.

Stacey Goodman, MD completed her hematology training at the NIH and Vanderbilt University before joining the faculty in 1993. She helped create and lead the Vanderbilt Amyloidosis Multidisciplinary Program (VAMP) until her retirement in 2021. She currently serves as a member of the board of directors at the Amyloidosis Foundation.

Dr. Patrise Holden, Founder and CEO of The Language Key®, is a creative consultant, music therapy educator, and podcast host. She co-founded a music arts therapy program and is a passionate advocate for the disabled and terminally ill, known for her engaging educational programs and award-winning work in communication.

Vanessa Finch is the Founder of Leebo’s Sickle Cell Support Group, created in loving memory of her son, Leebo Beckett. Driven by lived experience, she advocates for SCD awareness, family support, and emergency room reform to improve care and outcomes for sickle cell patients.

With an international business career spanning more than thirty years as a senior executive in an investment and management company, and master’s degrees in organizational development and marriage and family therapy, Ian brings a rich and informed perspective to all he does. Fascinated by people, and passionate about making the right kind of difference in their lives, Ian delights in the power of intensive experiences, and in providing therapeutically informed coaching.

In addition to his work as a therapeutically informed coach, Ian serves on the boards of the Aquaya Institute and Save Westport Now, as their board chairs, and remains active in a number of business ventures. Ian loves being a stranger in strange lands, spirited driving, alpine skiing, boating, good books, and enjoying time with wonderful friends.

Cath Jayasuriya is a certified life and health coach, with a master’s in counseling, who practices yoga, mindfulness and present moment living. She is a writer, film director, and the founder of Coalition Duchenne and Duchenne Without Borders, which raise funds and awareness for Duchenne. Her 29-year-old son Dusty Brandom has Duchenne.

Cath’s award-winning documentary Dusty’s Trail: Summit of Borneo (www.Dustystrail.org) can be streamed on Amazon Prime Video and Tubi.

Cath has initiated groundbreaking research, most recently with Dr. Eduardo Marban working on cardiac stem cells — currently in trials by Capricor. She also worked with Professor Steve Wilton on foundational work on oligos that led to the first FDA treatments of Duchenne. Among other initiatives, Coalition Duchenne/Duchenne Without Borders have recently started an outreach project distributing medical equipment for boys with Duchenne in rural areas around the world.