Leadership

Medical Advisory Board

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Florian Eichler, MD

Learn more about Dr. Eichler 

Robert F. Sidonio, Jr., MD, MSc.

Learn more about Dr. Sidonio 

Rebecca Spencer, MD, PhD

Learn more about Dr. Spencer 

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Julie Cohen, ScM, CGC

Learn more about Julie 

Rebecca McClellan, MGC, CGC

Learn more about Rebecca 

Jamie Kostialik, MS, CGC

Learn more about Jamie 

Board of Directors

Emma Bliss

President

Learn more about Emma 

Emma Hayes

Treasurer

Learn more about Emma 

Julia Apodaca-Lane

Learn more about Julia 

Mita Dhullipala

Learn more about Mita 

Mindy Cameron

Learn more about Mindy 

Liz Kennerly

Learn more about Liz 

Audrey Russell

Learn more about Audrey 

Amy Englert

Learn more about Amy 

Michelle Erskine

Vice President

Learn more about Michelle

Tess Nelson

Program Lead

Learn more about Tessa 

Jade Day

Learn more about Jade 

Jennifer Krafchik

Learn more about Jennifer 

Staff

Taylor Kane

Executive Director

Learn more about Taylor 

Volunteer Leadership Team

Sydne Pantaleon

Brand Ambassador

Learn more about Sydne 

Carrier Advisory Committee

Katie Marino

Adrenoluekodystrohy - USA

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April Bizzell

Chronic granulomatous disease - USA

Autumn Prince

Ornithine transcarbamylase deficiency - Canda

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Noelia Buniva

Adrenoleukodystrophy - Argentina

Anna Torrey

Adrenoleukodstrophy  - USA

Shellye Horowitz

Hemophilia  - USA

Frani Broussard Denenburg

Adrenoleukodystrophy - USA

Patricia Miletto

Aarskog syndrome - USA

Ann Kendall

Hemophilia  - USA

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Ruth Gutierrez

Adrenoleukodystrophy  - USA

Eilidh Stewart

Fabry disease - Scotland

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Sarah Tong

Adrenoleukodystrophy - USA

Laurie Hayes

Adrenoleukodstrophy  - USA

Janisse Jaimeyfield Gass

Adrenoleukodystrophy - USA

Holly Rausch

Adrenoleukodystrophy - USA

Deb Jennsen

Duchenne muscular dystrophy - USA