2023 Hunter Syndrome Conference

Join Us

March 11th - 12th

Join Us!

Third Annual Virtual Conference

Look forward to hearing the latest updates in industry and research and connect with other families experiencing similar Hunter Syndrome journeys. Enjoy live entertainment, games, and give-aways!
Speakers

Speakers

Lauren Pisani
Lauren Pisani, MD, FACMG
Clinical Development Lead, REGENXBIO Inc
Cara Mayfield
Cara Mayfield
Vice President, Patient Advocacy and Corporate Communications, Homology
Dr. Tracy McGregor
Dr. Tracy McGregor
Clinical Development Physician, Homology
Nyra Cooke
Nyra Cooke
VP LSD-ENDO, Hematology & Transplant Patient Services, Takeda
Tony Frangie
Tony Frangie
Vice President, Lysosomal Storage Disorders, Takeda
Julie Eisengart
Julie Eisengart, PhD
Pediatric Neuropsychologist
Erin Jozwiak
Erin Jozwiak
Pediatric Nurse Practitioner at UCSF
William Rhoads
William Rhoads, M.D., M.S.
Pediatric Anesthesiologist, Department of Anesthesia UCSF Benioff Children's Hospital Oakland
Dan Pezzetta
Dan Pezzetta
Rare Disease Advocate
Emily Nguyen
Emily Nguyen
Young Adult Rare Representative
Deb Cehak
Deb Cehak
Advocate, Registered Clinical Counselor
Kimberly Stephens
Kimberly Stephens
DBA
Emily Watson
Emily Watson
MPS II Sibling
Jasmine Henriquez
Jasmine Henriquez
MPS II Sibling
Nathan Grant
Nathan Grant
MPS II Sibling
Troy Lund
Troy Lund, PhD, M.D., FAAP
Pediatric Blood and Marrow Transplant Physician
Mark Dant
Mark Dant
Chair Of The Board Of Directors at EveryLife Foundation for Rare Diseases
Jennifer Siedman
Jennifer Siedman
Director of Community Engagement at Courageous Parents Network
Kyle Underwood
Kyle Underwood, MHA
Program Manager II, Cleveland Clinic
Nicholas DiTommaso
Nicholas DiTommaso
MPS II Patient and Advocate
Jason Madison
Jason Madison
MPS II Patient and Advocate, Board Member of The National MPS Society
Elizabeth Jalazo
Elizabeth Jalazo, M.D.
Assistant Professor Genetics & Metabolism-UNC Department of Pediatrics
Kim Whitecotten
Kim Whitecotten
MPS II Parent
Jen Carter
Jen Carter
MPS II Parent
andrew hoffman
Andrew Hoffman
MPS II Parent
Kristin McKay
Kristin McKay
Executive Director at Project Alive
Schedule
March 11
11:00AM - 11:30AM EST
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.
11:00 AM - 11:30 AM EST
Expo
Expo Booths Open
11:45 AM - 12:00 PM EST
Session
Opening and Welcome
Opening remarks from the Executive Director and President of Project Alive.
12:00PM - 1:00PM EST
Stage
MPS II Parent Panel
Parents discuss issues that Hunter families face
1:00PM - 1:20PM EST
Stage
UNC MPS II Center Update
Latest news on the progress of the MPS II Center at UNC.
1:20PM - 1:30PM EST
Networking
Break 1
1:30PM - 2:15PM EST
Stage
Industry Updates - Part 1
RegenXBio, JCR, Denali
2:15PM - 2:30PM EST
Expo
Break 2
2:30PM - 3:00PM EST
Stage
Industry Updates - Part 2
Homology, Takeda
3:00PM - 3:40PM EST
Break 3
3:40PM - 4:30PM EST
Stage
Living with MPS - Adult Journey
(MPS II Adult Panel) Adults living with MPS II discuss their journeys and experiences.
4:30PM - 5:20PM EST
Stage
Tackling the Sadness Along the Way-Teams and Tools to Support You
Courageous Parents Network
5:20PM - 5:35PM EST
Stage
Slideshow
Slideshow of our Hunter Syndrome families
5:35PM - 6:05PM EST
Stage
Family Bingo and Prizes
Lots of prizes to give away!
6:05PM - 6:15PM EST
Stage
Day One Closing Remarks
6:15PM - 8:00PM EST
Stage
Entertainment and Cocktails
Come have fun at Project Alive's Casino Night, where you'll have a chance to win some fabulous prizes!
Schedule
March 12
10:30AM - 11:00AM EST
Expo
Expo Booths Open
11:00AM - 11:10AM EST
Stage
Day Two Opening and Welcome
Opening remarks
11:10AM - 12:00PM EST
Stage
Parents as Advocates
Advocacy is empowerment! Hear about Mark Dant’s continuing journey as he advocates for his son and the Hunter community.
12:00PM - 12:50PM EST
Session
Transplant in MPS II
Presentation about research on transplant in the MPS II population with Q & A
12:00PM - 12:50PM EST
Session
Siblings Panel
Advice and encouragement from other siblings
12:50PM - 1:00PM EST
Break 1
1:00PM - 1:40PM EST
Session
Parent/Caregiver Self-care
Your health and well-being is just as important as your child's.
1:00PM - 1:40PM EST
Session
Advocacy 101
Everylife Foundation workshop: How to make your voice heard!
1:00PM - 1:40PM EST
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?
1:40 - 2:30 EST
Session
Anesthesia/ENT
Hear from experts about the airway concerns they experience with Hunter Syndrome patients.
1:40PM - 2:30PM EST
Session
Overview of MPS II: Head to Toe
An overview of the ways in which Hunter Syndrome affects the entire body.
1:40PM - 2:30PM EST
Session
Moment of Remembrance
Meet in the Remembrance Room under the Sessions tab to share memories and photos.
2:30PM - 2:40PM EST
Break 2
2:40PM - 3:30PM EST
Session
Build your MPS Team
Medical guidance for newly diagnosed families
3:30PM - 4:20PM EST
Stage
Behavioral Management/Speech Therapy
Advice from the experts about how to manage some of the difficult behavioral manifestations of Hunter Syndrome
4:30PM - 5:00PM EST
Stage
Conference Closing
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Building a Future Together

Project Alive envisions a world where every individual with Hunter syndrome has access to curative medicine. Help us make that dream come true. 

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