2022 Hunter Syndrome Community Conference
Join Us
March 18th - 12th
Speakers
Melissa Hogan, JD
Erin Jozwiak, RN, MSN, CPNP
Robin Harwell, M.A., CCC-SLP
Instructor and Clinician
Christy Zigler, Ph.D.
Assistant Professor in Population and Health Sciences, Duke University of Medicine
Matthew Ellinwood, D.V.M., Ph.D.
Chief Scientific Officer at the National MPS Society
Mathias Schmidt, Ph.D.
President and CEO of JCR USA & ArmaGen, Sr. Exec. Dir. Global Strategy, Board Member at JCR
Brian Bigger, Ph.D.
Professor of Cell and Gene Therapy at The University of Manchester
Fernanda Copeland, MS, RD, LDN
Global Head, Patient Advocacy & Engagement at AVROBIO
Brianna Yund, Ph.D.
Pediatric Neuropsychology Fellow at University of Minnesota Medical Center
Nathan Grant
Research Associate at the University of Minnesota, Neurodevelopmental Program in Rare Disease (NPRD)
Julie Eisengart, PhD, LP
Neurocognitive Specialist
Terri Klein
President, MPS Society
Kim Stephens, DBA
President of Project Alive
Cristol Barrett O'Loughlin
Founder and CEO of ANGEL AID
Sairei So, Ph.D
Director of Planning Department, JCR Pharmaceuticals Co., Ltd
Rachel Piccolo
Sr. Director Endocrine/LSD Patient Services, Takeda
Tony Frangie
VP, LSD Franchise Head, Takeda
Kim Ramsey
Director Patient Advocacy, Denali
Dr. Anna Bakardjiev
Senior Director of Development, Denali
Kendra Bjoraker, PhD, LP
Pediatric Neuropsychologist at 3:1 Neuropsychology Consultants, PLLC
Dawn Phillips
Director Clinical Outcomes Research, Regenxbio
Cara Mayfield
Vice President, Patient Advocacy and Corporate Communications, Homology
Julie Jordan, M.D.
Senior Vice President, Head of Clinical Development and Operations, Homology
Bob Stevens
Group CEO, MPS Society & Rare Disease Research Partners Vice Chair, International MPS Network
Kevin O'Brien
Manager, Patient Advocacy, REGENXBIO
Paul Harmatz, M.D.
MPS Specialist
Barbara Burton, MD
MPS Specialist
Joseph Muenzer, MD, PhD
MPS Specialist
Schedule
March 18
Session
Newly Diagnosed Families
Meet with other families and learn information to help you as you begin this journey.
Stage
HSCC 2022 Opening
Introduction and welcoming from Dr. Kim Stephens, president of Project Alive.
Stage
Ask the Experts - Panel of MPS II Specialists
Q&A from the leading MPS Medical Specialists in America
Stage
Relationships in MPS II Families
Addressing the challenges our families face with siblings and marriage.
Stage
Live Music by Los Mocosos
rock/reggae/funk/ska/salsa band that toured with Santana
Dance floor watching Los Mocosos
Watch the band play live while showing off your dance moves.
Schedule
March 20
Session
Workshop: Preparing for IEP Meetings
Learn how to design an education plan that includes proper instruction, support and services for your child.
Session
Workshop: Anesthesia/Airway Issues
Hear from experts about the airway concerns they experience with Hunter syndrome patients.
Session
Workshop: Addressing Medical Trauma
What is medical trauma? Why is it important to understand for our children?
Session
Workshop: What's next for our older attenuated boys?
What is life like as our boys get older?
Session
Workshop: What's next for our older severe boys?
What might might we face as our boys physically age?
Session
Workshop: Navigating MPS Appointments
Which specialists to does your child need to see and how often? How can I keep track of all these appointments?
Schedule
March 19