Speakers & Planning Committee

2024 Speakers

Chief, Division of Metabolic Disorders
Children's Hospital of Orange County (CHOC)

Jose Abdenur, MD

Genetic Counselor
Children's Hospital of Orange County (CHOC)

Rebekah Barrick, MS, CGC

Rare Community Member

Christopher Barry

Patient Advocate
Grace Fisher Foundation

Grace Fisher

Clinical Sexologist, Clinical Sex Therapist
Dr. Fynan Counseling, Coaching & Consulting

Michelle Fynan, PhD, LMHC

Executive Director
Hemophilia Foundation of Southern California

Rigo Garcia, MPH

Executive Director
Dreamsickle Kids, Inc

Georgene Glass

Assistant Professor, Associate Director of Research for the UW Genetic Counselor Studies Program, Department of Pediatrics, Division of Genetics and Metabolism
University of Wisconsin School of Medicine and Public Health

April Hall, PhD, MS, CGC

Board Member/Legislative Director
Sickle Cell Association of Houston

Andre Harris, MSW

Project Guardian

Zhanzhi Hu, PhD

MD Candidate, BS, Patient
Boonshoft School of Medicine

Maddie Jewell

Remember The Girls

Taylor Kane

Professor, Microbiology, Immunology & Molecular Genetics; Pediatrics (Hematology/Oncology); Molecular & Medical Pharmacology

Donald Kohn, MD

Information and Resource Services Manager
National Organization for Rare Disorders

Alicia Lawrence, LMSW

Award Winning Writer, Director, Disability Advocate

Miles Levin

Attending Pediatric Oncologist, Clinical Instructor

Amanda Marinoff, MD

Rare Community Member, CEO
Speragen, Inc

Alice McConnell

Creator & Founder
Rare Mamas

Nikki McIntosh

Pediatric Genetic and Rare Disease Scientist
Cientifica Latina

Viridiana Murillo, MSGDA, CGMBS, MB (ASCP) CM

Professor and Vice Chair of Human Genetics and Professor of Psychiatry
David Geffen School of Medicine at UCLA

Stanley Nelson, MD

Delaware Ambassador
NORD Rare Action Network (RAN)

Irfan Patel

Founder, CEO
The Mighty

Mike Porath

ALD Alliance

Elisa Seeger

Certified HIPAA Compliance officer, ACMA Prior Authorization Certified Specialist
Founder & Principal JLS Consulting LLC

Jennifer Shumsky, BSN, RN, CNMAP, PACS, CHCO

Deputy Director
Partnership to Improve Patient Care

Thayer Surette Roberts

Rare Community Member

Esmeralda Vazquez

Founder and Lead Advocate
STAC3.org and NORD Students for Rare Chapter at the University of Pennsylvania

Magnolia Wang

2024 Living Rare, Living Stronger Planning Committee

We sincerely thank the members of our national planning committee for sharing their time, talents, and expertise with us to assist with the careful selection of session topics and connection-making opportunities at this year’s Living Rare Forum.

Jose Abdenur, MD
Children’s Hospital of Orange County (CHOC)

Victoria Arreola
Rare Action Network

Erica Barnes, MA, CCC-SLP
Minnesota RDAC, University of Minnesota

Nicole Cameron
Running for Rare

Gina Glass
Dreamsickle Kids, Nevada RDAC

Nazia Harque
Michigan State University, Students for Rare

Alicia Lawrence, LMSW

Sean Riley
Amyloidosis Speakers Bureau

Becky Strong
Pemphigus & Pemphigoid Foundation

Jean Walsh, LSW
Friedreich’s Ataxia

Magnolia Wang
University of Pennsylvania, Students for Rare