Media, Speaking Engagements & Appearances
World Orphan Drug Congress Boston
April 25th, 2024
Fireside Chat with TREND Community: “Elevating the Patient Voice towards Insights and Drug Discovery for Rare CNS Disease”
UnravelingRare Podcast with Eleni Pitsiniaga
December 07, 2023
Unravel Bio’s “UnravelingRare” podcast is amplifying the voice of patients to align drug discovery and increase clinical impact.
AP-4-HSP 7th Annual Research Conference, Boston Children's Hospital
October 13th, 2023
Welcome Speech
Inaugural Innovation Hubs for Gene Therapies Staff Event, Birmingham England
September 25th, 2023
Keynote Speaker: “A Research Journey”
Her Story 95.7 BEN FM, hosted by Kathy Romano
July 14th, 2023
Her Story is a radio show about empowering influential women who shape the society we live in, and have interesting stories to tell.
Afternoon Drive with Drew Moholland- Kasey Edwards
June 20th, 2023
Boston Globe
September 27, 2019
The odds of my daughter developing her medical condition were 1 in 750 million
The Mighty- Making Health about People
October 20, 2018
What Happened After We Were Told Our Daughter’s Rare Condition Had No Cure
The Mighty- Making Health about People
May 3, 2018
How One Good Laugh Changed My Perspective on My Child’s Health
Code Talker Award, Presented by Genome Magazine and the National Society of Genetic Counselor
September 15, 2017
Authored a story for the then Code Talker Award highlighting Kira Dies, out of Boston Children’s Hospital, who won the award for her excellence in compassion, expertise, and helpfulness, particularly for her role in propelling the momentum of AP-4.
The Mighty- Making Health about People
March 2, 2017
Why I’m Choosing Happiness When Facing My Daughter’s Ultra-Rare Disorder
Boston Children's Hospital
December 16, 2016
Meet Molly and Robbie: 3-year-olds share rare diagnosis | Boston Children’s Hospital
