Speakers & Planning Committee

2021 Speakers

Policy Analyst, Public Policy
National Organization for Rare Disorders (NORD)

Corinne Alberts

Associate Dean, School of Medicine, Professor of Medicine, of Genetics, of Biomedical Data Science and Pathology
Stanford University Medical Center

Euan A. Ashley, MD PhD

President
Avalon Foundation

Deborah Ayres

President and Chief Executive Officer
The Ehlers- Danlos Society

Lara Bloom

Program Director, Office of Rare Diseases Research
National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH)

Philip John Brooks, PhD

Student, Advocate
University of Illinois at Urbana Champaign

Lauren Bryant

Florida Volunteer State Ambassador
NORD Rare Action Network

Jhoanny Cardenas

Founder
Brett Chinn Coaching & Consulting

Brett Chinn

Kennedy Family Professor of Pediatrics and Medicine and Director of Clinical Genetics
New York–Presbyterian Hospital/ Columbia University Medical Center

Wendy Chung, MD, PhD

Pediatric Nurse Practitioner, Caregiver
Nemours/Alfred I. duPont Hospital for Children

Erin Coyne

Physician, Division of Diagnostic Referral, Department of Pediatrics
Nemours/Alfred I. duPont Hospital for Children

Matt Demczko, MD

Chief Executive Officer and Cofounder
FOXG1 Research Foundation

Nasha Fitter

Psychologist, Caregiver
Freedman Counseling Associates

Al Freedman, PhD

Associate Director of Policy
National Organization for Rare Disorders (NORD)

Rose Gallagher, MPA

Teacher, Advocate

Ellyn Goodrich

Program Officer
Office of Rare Diseases Research National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH)

Alice Chen Grady, MD

Student, Patient Advocate
Hunter Syndrome

Nathan Grant

Founder and President
Live to Inspire Foundation

Cody Hanson

Attorney
Law Offices of Dana Johnson

Laura Heneghan, JD

Director
Sibling Support Project

Emily Holl

Founder and President
Cure Rare Disease

Richard Horgan

Patient, Advocate
Mitochondrial Myopathy

Adam Johnson

Arkansas Volunteer State Ambassador
NORD Rare Action Network

Tammy Jones

Author, Cofounder
The Calliope Joy Foundation

Maria Kefalas, PhD

Writer, Caregiver

Julie Kim

Outreach Coordinator
Access Health CT

Ellyn Laramie

Assistant Professor
Yale School of Medicine

Monkol Lek, PhD

Managing Shareholder
Liner Legal LLC

Michael Liner

Vice Chair
VHL Alliance Board

Stacy Lloyd

Founder and Executive Director
Courageous Parents Network

Blyth Lord

Partner
Self-Management Resource Center

Kate Lorig, MS, MPH, DrPH

Postdoctoral Fellow, Biomedical Ethics
Stanford Center for Biomedical Ethics

Jennifer Louise Young, PhD

Student/Patient Advocate
Pitt Hopkins Syndrome

Josie Luna, Student

Program Specialist, Member Education and Engagement, Value Based Care Models, Health Care Affairs
Association of American Medical Colleges

Lisa Massey

Creator and Founder
Rare Mamas

Nikki McIntosh

Student, Patient Advocate
Isolvaleric Acidemia

Caroline Monaco

Occupational Therapist (retired) MUSC Patient and Family Advisor
National Hemophilia Association, Medical University of South Carolina

Connie Montgomery

Hospice Palliative Medicine Fellow
University of Nevada, Reno

Michelle Moon, DO

Associate Professor of Neurology, Director Neurosciences Consultation, and Infusion Center; Director, Stiff Person Syndrome Center

Scott Newsome, DO, MSCS, FAAN, FANA

Nurse Practitioner, Caregiver
Krabbe Disease

Laura Nitahara

President and Cofounder, Caregiver
TESS Research Foundation

Kim Nye

Delaware Volunteer State Ambassador
NORD Rare Action Network

Irfan Patel

Founder and Chief Executive Officer
Cure VCP Disease Inc.

Nathan Peck

Director of Patient Services
National Organization for Rare Disorders (NORD)

Jill Pollander, RN, MSN

New Jersey Volunteer State Ambassador
NORD Rare Action Network

Julie Raskin

Cofounder
This Porphyria Life

Claire Richmond, MS, MPH

Business Development
Rare Revolution Magazine

David Rose

Executive Director
CdLS Foundation

Bonnie Royster

Founder & Executive Director
Rare and Black

Dionne Stalling

North Carolina Volunteer State Ambassador
NORD Rare Action Network

Patricia Sullivan

Director
Rare Disease Institute Children’s National

Marshall Summar, MD

New York Volunteer State Ambassador
NORD Rare Action Network

Mary Wootten

President
HyperIgM Foundation

Akiva Zablocki, MPH

Founder and President
The Stiff Person Syndrome Research Foundation

Tara Zier, DDS

2021 Living Rare, Living Stronger Planning Committee

Deborah Ayres
The Avalon Foundation; Caregiver

P.J. Brooks, PhD
NCATS, NIH

Al Freedman, PhD
Freedman Counseling Associates; Caregiver

Meghan Halley, PhD, MPH
Undiagnosed Diseases Network; Caregiver

Shafali Spurling Jeste, MD
UCLA David Geffen School of Medicine; NORD Board of Directors

James F. Leckman, MD, PhD
Yale School of Medicine; NORD Medical Advisory Committee

Effie Parks
Once Upon a Gene podcast; Caregiver

Wendy Slavit, MPH, CHES 
FDA, Office of Patient Affairs

Jack Timperley
Fanconi Anemia Research Fund; Advocate

Mary Wootten
New York Volunteer State Ambassador, NORD Rare Action Network

Get Involved!

ATTENTION PATIENTS & CAREGIVERS: Interested in attending the Living Rare Forum for free? Email [email protected]
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