Skip to content

Hunter Syndrome Community Conference 2021

Calendar icon to
User icon 15 people attending

Schedule

· Stage
Opening
Welcome & Announcements
Kim Stephens, DBA
2021-03-19T15:00:00Z 2021-03-19T15:25:00Z America/Los_Angeles Opening https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Stage
Panel of MPS 2 Specialists
Q & A with Drs. Muenzer, Harmatz, Burton
Paul Harmatz, M.D. Barbara Burton, MD Joseph Muenzer, MD, PhD
2021-03-19T15:30:00Z 2021-03-19T16:45:00Z America/Los_Angeles Panel+of+MPS+2+Specialists https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Stage
Neurocognitive Specialists
Q & A with Shapiro and Eisengaert, Ph.D.
Elsa Shapiro, PhD, ABPP Julie Eisengart, PhD, LP
2021-03-19T17:00:00Z 2021-03-19T17:45:00Z America/Los_Angeles Neurocognitive+Specialists https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Stage
Carpal Tunnel Syndrome and MPSII
Loree Kalliainen, MD
2021-03-19T17:45:00Z 2021-03-19T18:30:00Z America/Los_Angeles Carpal+Tunnel+Syndrome+and+MPSII https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Stage
Keynote
Newborn Screening
Terri Klein, NPGC
2021-03-19T18:30:00Z 2021-03-19T19:00:00Z America/Los_Angeles Keynote https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Stage
Closing
Announcements
Kim Stephens, DBA
2021-03-19T19:00:00Z 2021-03-19T19:15:00Z America/Los_Angeles Closing https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Stage
Live Entertainment
Rock out with Big Head Todd and the Monsters!
2021-03-19T19:00:00Z 2021-03-19T20:30:00Z America/Los_Angeles Live+Entertainment https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Sessions
(optional) Sidebar
Pour your favorite drink and enjoy good company!
2021-03-19T19:00:00Z 2021-03-19T20:30:00Z America/Los_Angeles %28optional%29+Sidebar https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Expo
Live Booths
Visit sponsored booths with live interactions
2021-03-20T08:00:00Z 2021-03-20T09:00:00Z America/Los_Angeles Live+Booths https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Stage
Opening & introductions
Morning announcements and agenda
2021-03-20T09:00:00Z 2021-03-20T09:15:00Z America/Los_Angeles Opening+%26+introductions https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Stage
Caregiver self-care Opening
Opening talk with Cristol O’Loughlin Barrett
Cristol Barrett O’loughlin
2021-03-20T09:15:00Z 2021-03-20T09:40:00Z America/Los_Angeles Caregiver+self-care+Opening https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Stage
Industry / Research Updates
Updates from:
Joseph Muenzer, MD, PhD Haiyan Fu, PhD
2021-03-20T09:45:00Z 2021-03-20T12:30:00Z America/Los_Angeles Industry+%2F+Research+Updates https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Expo
Intermission & Booths
Take a break and stop by the booths for live engagement
2021-03-20T12:30:00Z 2021-03-20T12:45:00Z America/Los_Angeles Intermission+%26+Booths https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Stage
Panel with attenuated teens / adults
Q & A with MPS II attenuated teens / adults
2021-03-20T12:45:00Z 2021-03-20T13:45:00Z America/Los_Angeles Panel+with+attenuated+teens+%2F+adults https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Expo
**MOVE to middle of industry updates***Intermission
Take a stretch away from the screen and order dinner
2021-03-20T13:30:00Z 2021-03-20T13:45:00Z America/Los_Angeles %2A%2AMOVE+to+middle+of+industry+updates%2A%2A%2AIntermission https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Sessions
Breakout Session 1
Meet families: [parents w/ child's Age 0-4, 5-9, or 10+], [Attenuated teens/adults], [Grandparents & Super Supporters], [Angel Group], [Kids/Siblings]
2021-03-20T13:45:00Z 2021-03-20T14:25:00Z America/Los_Angeles Breakout+Session+1 https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Stage
Intermission
2021-03-20T14:25:00Z 2021-03-20T14:35:00Z America/Los_Angeles Intermission https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Sessions
Breakout Session 2
Share your experiences: [Alternative remedies], [Home infusions], [Intrathecal ERT], [Transplant families], [Teenage/Adult siblings]
2021-03-20T14:35:00Z 2021-03-20T15:15:00Z America/Los_Angeles Breakout+Session+2 https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Sessions
Breakout Session 3
Share your experiences: [IVF], [Surgeries], [Durable Medical Equipment], [Managing behaviors]
2021-03-20T15:15:00Z 2021-03-20T16:00:00Z America/Los_Angeles Breakout+Session+3 https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Stage
Caregiver self-care Closing
Closing talk with Cristol O’Loughlin Barrett
Cristol Barrett O’loughlin
2021-03-20T16:00:00Z 2021-03-20T16:30:00Z America/Los_Angeles Caregiver+self-care+Closing https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Stage
Closing
Thank yous and announcements
Kim Stephens, DBA
2021-03-20T16:30:00Z 2021-03-20T17:00:00Z America/Los_Angeles Closing https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Stage
Live Entertainment
Dance the night away with DJ Raymix!
2021-03-20T17:00:00Z 2021-03-20T18:30:00Z America/Los_Angeles Live+Entertainment https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Sessions
(optional) Sidebar
Pour your favorite drink and enjoy good company!
2021-03-20T17:00:00Z 2021-03-20T18:30:00Z America/Los_Angeles %28optional%29+Sidebar https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Sessions
Workshop 1
Workshops [Navigating MPS Appointments] [Addressing Medical Trauma]
2021-03-21T11:00:00Z 2021-03-21T11:50:00Z America/Los_Angeles Workshop+1 https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Sessions
Workshop 2
Workshops [Financial Planning/ Special Needs Trust] [Fundraising & Building a Supportive Community]
2021-03-21T12:00:00Z 2021-03-21T12:50:00Z America/Los_Angeles Workshop+2 https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Stage
Backpack Health
Manage, own and share health information
2021-03-21T12:50:00Z 2021-03-21T13:10:00Z America/Los_Angeles Backpack+Health https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)
· Sessions
Workshop 3
Workshops [Preparing for IEP Meetings] [Financial Planning/ Special Needs Trust repeat]
2021-03-21T13:10:00Z 2021-03-21T14:00:00Z America/Los_Angeles Workshop+3 https%3A%2F%2Fhopin.com%2Fevents%2Fhscc2021 Hosted virtually on Hopin (link in the description)

Speakers

Loree Kalliainen, MD

Orthopedic Hand Surgery Specialist

Terri Klein, NPGC

President of National MPS Society

Haiyan Fu, PhD

UNC Gene Therapy Research

Cristol Barrett O’loughlin

Angel Aid Care

Kim Stephens, DBA

President of Project Alive

Julie Eisengart, PhD, LP

Neurocognitive Specialist

Elsa Shapiro, PhD, ABPP

Neurocognitive Specialist

Joseph Muenzer, MD, PhD

MPS Specialist

Barbara Burton, MD

MPS Specialist

Paul Harmatz, M.D.

MPS Specialist

Ticket icon

Tickets

Already registered? Log In to access the event

All tickets are sold out.

Hosted by

Project Alive

Project Alive is a 501(c)(3) non-profit organization dedicated to research and advocacy towards curing Hunter Syndrome.

Share on

Booths

Takeda

Your journey is our journey

Homology

homologymedicines.com

Denali Therapeutics

EngageHunter.com

Every Life Foundation for Rare Diseases

everylifefoundation.org

Backpack Health

Manage, own and share health information

JCR Pharmaceuticals

jcrpharm.co.jp

Avrobio

avrobio.com

Regenxbio

regenxbio.com

Project Alive

Join our community!

Angel Aid Cares

angelaidcares.org

University of California San Francisco

Phase I trial for ERT before birth

National MPS Society

mpssociety.org

MPS Society Sibling Resource

mpssociety.org