Alyssa Ascencio is a recent college graduate living with Ehlers Danlos Syndrome. She holds an M.A. in Higher Education Administration from Loyola Marymount University and a B.A. in Economics with an emphasis in Business and Minor in Gender Studies from Whittier College. Alyssa’s professional passion is rooted in helping minority communities, working with diverse populations, and mitigating the factors behind inter-sectional struggles. She strives to act as a change agent for marginalized students in higher education and bring equitable access to every student with a rare disease and/or chronic illness.

A grants professional specializing in human service organizations, Sheila Castle Rivera has dedicated her career to helping nonprofits grow and adapt. She was diagnosed with Retinitis Pigmentosa, a genetic degenerative eye disease, in her early twenties, and did her best to deny its life-altering impacts for several years. After finding highly skilled and compassionate care in the Houston Medical Center, she learned how to better manage her disease and associated vision loss. Sheila lives in Houston, Texas, with her husband and young daughter. She is excited to work alongside and learn from her fellow members of the Programming Advisory Council and the staff of Our Odyssey.

Ashanthi De Silva is a professional patient advocate who is passionate about collaborating with underrepresented communities in health care and research, and uses her strategic communications and health expertise to empower and engage patient voices in the rare disease space. She has organized and spoken on numerous panels about patient-centric drug development and the future of gene and transformative therapies for patients and families, and helped create the first diversity, equity, and inclusion (DEI) program for rare disease nonprofit organizations with the National Organization for Rare Disorders. She currently works for a real world data research organization connecting rare and chronic disease communities with accessible opportunities in research.

Isela Devora is a native to Phoenix, Arizona and lives with multiple chronic illnesses. She obtained a Bachelor’s Degree in Social Work from Arizona State University and a Master’s Degree in Public Administration from Grand Canyon University.

In 2021, Isela started her patient advocacy journey by writing articles describing her personal experiences living with chronic health issues. She loves to connect with fellow spoonies and supporting others who are finding their voice.

In her spare time, Isela enjoys reading, sewing, crocheting, puzzling, and spending time with family and friends.

Kenna McEvoy is passionate about supporting, mentoring, and encouraging others, and she has personal experience as a patient and advocate for those with medical and mental health challenges. As a young adult affected by multiple chronic illnesses of her own, she believes that every person’s story is unique, matters, and deserves to be heard, celebrated, and deeply understood.

Kenna holds a college degree with graduate-level course work in behavior change which has given her a firm grasp on the fields of mental health, chronic illness, and rare disease. Her numerous volunteer, internship, and employment experiences position her well to serve others in the context of a nurturing group environment, and she holds a hopeful, compassionate, and empathetic outlook for those living with chronic conditions. In her free time, Kenna enjoys advocating for individuals with rare diseases and autism, spending time with family and friends, volunteering, and writing blog articles.

Colin Werth is a lifelong resident of Farmville, Virginia and has a degree in IT from Southside Virginia Community College. He works as an IT Specialist for Letterpress Communications. In addition to his work in the IT and marketing field, Colin is a patient advocate for the rare disease community. He was diagnosed with Duchenne Muscular Dystrophy at age 3 in 1998. Colin became involved with patient advocacy organization Parent Project Muscular Dystrophy in 2016 by joining their Adult Advisory Committee to help provide guidance on Duchenne related programs as an individual living with the disease. He has worked with multiple pharmaceutical companies to integrate the perspective of the adult community in their drug development process. Colin is a passionate patient advocate and strives to educate others about Duchenne and the science behind the disease.