Upcoming: In the Room: The Holidays: Coping Through the Season

A bereaved mom, Jennifer brings her experience as a teacher and development professional to her role in engaging patient and caregiver organizations, industry partners and healthcare providers. A rare disease mom, she serves as President of Ben’s Dream: Sanfilippo Research Foundation and worked with researchers and patient advocacy groups worldwide to fund and advance gene therapies to the clinical trial stage. In addition to co-authoring Supporting Families Considering Participation in a Clinical Trial, and NeuroJourney.org she has been recognized with a Boston Celtics Heroes Among Us award, Global Genes RARE Champion of Hope and Sanofi Torch Award. Jennifer received her M.Ed in middle school education from Lesley University.

Lindsey entered the advocacy arena when her son was prenatally diagnosed with two rare genetic abnormalities, one of which is 5p­Syndrome. After Owen's birth, Lindsey had to leave her career as a leadership and development facilitator to become his full-time caregiver, therapist, nurse, and advocate. During this time, Lindsey has become well acquainted with the shortcomings that exist in our culture, communities, and medical system for patients and families of medically fragile children. Lindsey is a Parent Champion for the Courageous Parents Network and a member of the Board of Directors for the NW Rare Disease Coalition. She also advocates for patient families with the NW Pediatric Palliative Care Coalition, Pierce County lnteragency Coordinating Council for Early Support for Infants and Toddlers, WA State Parent Institute of Engagement, and Mary Bridge Children's Hospital. She remains dedicated to educating people about the rare disease community by sharing her family's story.

Blair is a devoted mother, corporate professional, and passionate advocate for children with complex medical needs. She is the mother of two children, including her beloved son Bubba, who was born with a rare neurological condition—neuronal migration disorder with cortical malformation due to a MED13 gene mutation. Bubba passed away in 2024 at the age of 10, leaving a lasting impact on all who knew him. In his memory, Blair continues to channel her love and experience into advocacy, working with Courageous Parents Network as a Parent Champion to support and empower other families facing similar journeys. In addition to her role in the corporate world, she dedicates her time to government advocacy and is a Lay Educational Advocate, helping families navigate the special education system.