Speakers & Planning Committee

2022 Speakers

Be sure to check back often for updates.

Hao-Fountain Syndrome

Maggie Adair

Associate Professor, Associate Director
Cincinnati Children's Hospital Medical Center

Kara Ayers, PhD

Director of Clinical Trial Affairs
Cystic Fibrosis Foundation

Patricia Burks, MA, RN, CCRC

Director APRN/PA Services, Pediatric Institute and Pediatric Nurse Practitioner
Cleveland Clinic

Carrie Cuomo

Director of Telegenetics and Digital Genetics
Cleveland Clinic

David Flannery, MD

Pediatric Occupational Therapist; & President
Kelleigh's Cause

Kelleigh Gustafson

Assistant Professor of Pediatrics & Psychology
Nationwide Children's Hospital

Jaime Jackson, PhD

POEMS Syndrome

Daphne Jones

Patient Advocate
Foundation for Sarcoidosis Research

James Kuhn

Research Nurse Practitioner
Abigail Wexner Research Institute, Nationwide Children's Hospital

Kelly J. Lehman, MSN, CNP

Fibromuscular Dysplasia Society of America

Pam Mace, RN

Kentucky Volunteer State Ambassador
NORD Rare Action Network

Robert Myrick

Chief Medical & Scientific Officer

Edward Neilan, MD, PhD

Complex Care Social Work Care Manager
Cincinnati Children's

Ashley Santana, MSW, LISW

Private Practice Psychotherapist
Jodi Taub, LCSW

Jodi Taub, LCSW

Patient, Founder
Living Well with Sweatpants Sarah

Sarah Tobias

Program Manager
Cleveland Clinic

Kyle Underwood, MHA

2022 Living Rare, Living Stronger Planning Committee

Pam Judge
Connor B Judge Foundation

Melissa Kennedy
International Rett Syndrome Foundation

Caroline Kruse
Platelet Disorder Support Association

Pam Mace
Fibromuscular Dysplasia Society of America

Kim McBride, MD
Nationwide Children’s Hospital

Sudipto Mukherjee, MD, MPH
Cleveland Clinic

Marvin Natowicz, MD, PhD
Cleveland Clinic

Amy Parker
Batten Disease Support & Research Association (BDSRA)

Karen Utley
International Foundation for CDKL5 Research

Jerry Vockley, MD
UPMC Center for Rare Disease Therapy

Charlene York
Cure CMD