2023 Hunter Syndrome Conference
Join Us
March 11th - 12th
Speakers
Lauren Pisani, MD, FACMG
Clinical Development Lead, REGENXBIO Inc
Cara Mayfield
Vice President, Patient Advocacy and Corporate Communications, Homology
Dr. Tracy McGregor
Clinical Development Physician, Homology
Nyra Cooke
VP LSD-ENDO, Hematology & Transplant Patient Services, Takeda
Tony Frangie
Vice President, Lysosomal Storage Disorders, Takeda
Julie Eisengart, PhD
Pediatric Neuropsychologist
Erin Jozwiak
Pediatric Nurse Practitioner at UCSF
William Rhoads, M.D., M.S.
Pediatric Anesthesiologist, Department of Anesthesia UCSF Benioff Children's Hospital Oakland
Dan Pezzetta
Rare Disease Advocate
Emily Nguyen
Young Adult Rare Representative
Deb Cehak
Advocate, Registered Clinical Counselor
Kimberly Stephens
DBA
Emily Watson
MPS II Sibling
Jasmine Henriquez
MPS II Sibling
Nathan Grant
MPS II Sibling
Troy Lund, PhD, M.D., FAAP
Pediatric Blood and Marrow Transplant Physician
Mark Dant
Chair Of The Board Of Directors at EveryLife Foundation for Rare Diseases
Jennifer Siedman
Director of Community Engagement at Courageous Parents Network
Kyle Underwood, MHA
Program Manager II, Cleveland Clinic
Nicholas DiTommaso
MPS II Patient and Advocate
Jason Madison
MPS II Patient and Advocate, Board Member of The National MPS Society
Elizabeth Jalazo, M.D.
Assistant Professor Genetics & Metabolism-UNC Department of Pediatrics
Kim Whitecotten
MPS II Parent
Jen Carter
MPS II Parent
Andrew Hoffman
MPS II Parent
Kristin McKay
Executive Director at Project Alive
Schedule
March 11
Stage
Hunter Syndrome 101
Listen to Project Alive’s President and Executive Director, Kim Stephens and Kristin McKay, discuss what MPS II is and what to expect. This presentation is best for newly diagnosed families, educators and those in the medical field who are interested in hearing from parents and long-time advocates.
Session
Opening and Welcome
Opening remarks from the Executive Director and President of Project Alive.
Stage
UNC MPS II Center Update
Latest news on the progress of the MPS II Center at UNC.
Stage
Living with MPS - Adult Journey
(MPS II Adult Panel) Adults living with MPS II discuss their journeys and experiences.
Stage
Tackling the Sadness Along the Way-Teams and Tools to Support You
Courageous Parents Network
Schedule
March 12
Stage
Parents as Advocates
Advocacy is empowerment! Hear about Mark Dant’s continuing journey as he advocates for his son and the Hunter community.
Session
Transplant in MPS II
Presentation about research on transplant in the MPS II population with Q & A
Session
Parent/Caregiver Self-care
Your health and well-being is just as important as your child's.
Session
Advocacy 101
Everylife Foundation workshop: How to make your voice heard!
Session
Kids Learning - Biology of Hunter Syndrome
Basic biology lesson for kids age 4-8 years old.
What is different about my brother's body? Why does my brother need medicine?
Session
Anesthesia/ENT
Hear from experts about the airway concerns they experience with Hunter Syndrome patients.
Session
Overview of MPS II: Head to Toe
An overview of the ways in which Hunter Syndrome affects the entire body.
Session
Moment of Remembrance
Meet in the Remembrance Room under the Sessions tab to share memories and photos.
Stage
Behavioral Management/Speech Therapy
Advice from the experts about how to manage some of the difficult behavioral manifestations of Hunter Syndrome
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