Speakers

Donald Basel, MD

Medical Director, Genetics Center; Co-Program Director, Neurofibromatosis and RASopathy; Professor and Section Chief, Pediatrics (Genetics)

Medical College of Wisconsin/Children’s Wisconsin

Brett Bordini, MD

Associate Professor, Pediatric Hospital Medicine

Medical College of Wisconsin/Children’s Wisconsin

Pamela Gavin

Chief Executive Officer

NORD

Darby Gavin, MS

Senior Community Engagement Manager

NORD

John “JJ” Geeleher

Advocate; Patient; Wisconsin Ambassador

NORD Rare Action Network

James Griffin

Patient; Legislative Advocate; Community Board Member

Medical College of Wisconsin

Niki Grossheim, BS

Rare Patient Living with Myasthenia Gravis, Advocate, MG Wisconsin Support Group Leader

Member MG Holistic Society

April Hall, PhD, MS, CGC

Assistant Professor and Genetic Counselor, Department of Pediatrics, Division of Genetics and Metabolism

University of Wisconsin

Gretchen Heckel, MSN, RN

Nurse; Program Manager, Genetics Clinic

Children’s Wisconsin

Henry Heren

Retired, Veteran, Professional Trial Patient, Rare Disease Advocate

Elizabeth Kellom, MS, CGC

Genetic Counselor

The Waisman Center & UW Health Ophthalmology

Lani Knutson

Rare Mom and Caregiver; Legislative Advocacy Team; Board Member

Cure CMD, Wisconsin Rare Disease Alliance

M. Stephen Meyn, MD, PhD

Professor, Medical Genetics and Genomics Residency Director; Co-Director

University of Wisconsin, UW NORD Center of Excellence for Rare Diseases

Courtney Miles

Rare Mom; Special Education Patient Advocate; Program Manager, Digital Health & Experience

Children’s Wisconsin

Mike Muriello, MD

Associate Professor, Clinical Genetics and Genomics, Pediatrics

Medical College of Wisconsin/Children’s Wisconsin

Jake Saltonstall, MPA

Community Engagement Associate

NORD

Tiffany Sammons

Education Programs Manager

NORD and Rare Mama

Stacey Walthers Naffah

Rare mom and Caregiver;

Chair of the Foundation Board of Children’s Wisconsin

John Darrin Washburn

Lifelong Learner and Educator