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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.

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.

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