Leadership

Medical Advisory Board

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Florian Eichler, MD

Learn more about Dr. Eichler 

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

Learn more about Dr. Sidonio 

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Rebecca Spencer, MD, PhD

Learn more about Dr. Spencer 

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Julie Cohen, ScM, CGC

Learn more about Julie 

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Rebecca McClellan, MGC, CGC

Learn more about Rebecca 

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Jamie Kostialik, MS, CGC

Learn more about Jamie 

Board of Directors

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Emma Bliss

President

Learn more about Emma 

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Emma Hayes

Treasurer

Learn more about Emma 

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Kristy McCracken

Learn more about Kristy

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Samantha Coover

Learn more about Samantha 

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Jessica Branum

Learn more about Jessica 

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Liz Kennerly

Learn more about Liz 

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Jennifer Krafchik

Learn more about Jennifer 

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Amy Aikins

Learn more about Amy 

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Amy Englert

Learn more about Amy 

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Michelle Erskine

Vice President

Learn more about Michelle

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Tess Nelson

Program Lead

Learn more about Tessa 

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Jade Day

Learn more about Jade 

Staff

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Taylor Kane

Executive Director

Learn more about Taylor 

Volunteer Leadership Team

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Sydne Pantaleon

Brand Ambassador

Learn more about Sydne 

Carrier Advisory Committee

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Katie Marino

Adrenoluekodystrohy - USA

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April Bizzell

Chronic granulomatous disease - USA

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Autumn Prince

Ornithine transcarbamylase deficiency - Canda

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Noelia Buniva

Adrenoleukodystrophy - Argentina

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Anna Torrey

Adrenoleukodstrophy  - USA

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Shellye Horowitz

Hemophilia  - USA

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Frani Broussard Denenburg

Adrenoleukodystrophy - USA

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Patricia Miletto

Aarskog syndrome - USA

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Ann Kendall

Hemophilia  - USA

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Ruth Gutierrez

Adrenoleukodystrophy  - USA

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Eilidh Stewart

Fabry disease - Scotland

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Sarah Tong

Adrenoleukodystrophy - USA

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Laurie Hayes

Adrenoleukodstrophy  - USA

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Janisse Jaimeyfield Gass

Adrenoleukodystrophy - USA

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Holly Rausch

Adrenoleukodystrophy - USA

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Deb Jennsen

Duchenne muscular dystrophy - USA