See the Conference Overview
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Registration Closed Click to email us Online registration for this conference closed on Monday, June 12. If you would still like to register we will try to accommodate you as best we can. Please contact us via email or at +1 503-656-4808.
LIVE WEBCAST: There will be plenty of space on the free live webcast, which will appear on the Conference Overview page during the conference.
*** We are sorry, due to planning and space constraints we cannot accommodate on-site registration or walk-in attendees. ***
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2017 MLD Family Conference™ 2017 AGENDA
Sponsored by the MLD Foundation
July 14-15th in Suffolk, Virginia
July 13, 2017– subject to change ... See last year's agenda here
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Friday, July 14th
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Friday, July 14th
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9:00am
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Registration opens
Sea-esta Cove (Respite Room) opens
Light Continental Breakfast
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Foyer - (outside Kilby)
Chuckatuck
Foyer
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9:30
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Welcome & Personal Introductions
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Everyone
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10:15
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MLD, What’s in a Name? – Examining the biochemical roots of MLD and what it means to be a Lysosomal Disease/Leukodystrophy
Shire Study Summary - Diagnostics, Symptoms and Progression
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facilitated by Brett Crawford Ph.D., BioMarin
Discussion - All
Magdalena Harrington PhD, Shire |
12:15
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Lunch (Friday Industry and academic experts photo)
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Meade |
1:15
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Progress Toward a Treatment – hear and discuss the latest going ons in MLD research and learn the steps in the research process
Gene Therapy with Transplant – Milano
Discussion of other research and next steps |
Francesca Fumigali MD, San Rafaelle SR-TIGET
Discussion - all
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2:00
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Ladies Meet-up and Mens Meet-up – A time for those new and for those more experienced on the MLD journey to come together in a small, caring, confidential environment
Academia & Industry Brainstorm – A brief brainstorm of priorities for future MLD research, clinical, and advocacy efforts
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MLD Parents/Caregivers
Academia and Industry Attendees
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3:00
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Break
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Meade |
3:15
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Navigating the Medicaid Maze – Learn the ins and outs of Medicaid, who is eligible, what it provides, how to apply
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Inez Loyd, Social Security Administration
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3:45
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Progress Toward a MLD Newborn Screen – Learn how the WA State NBS pilot is going and what are the next steps
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Prof. Michael Gelb, Univ. of Washington
Discussion - All
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4:15
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MLD & Rare Disease Advocacy – Explore the policy issues, learn how to make a difference that matters
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Discussion - All
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5:00
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Family Time
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6:00
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Dinner
Followed by Suffolk Community concert on the lawn or up in room 320
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Meade
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9:00-12:00
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MLD After Hours ... You are invited to MLD After Hours after the concert winds down. Put the kids to bed, kick off your shoes, and come on up to join us for an informal time of sharing and conversation. Who knows, you might even find some surprises to pass the time!
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MLD Central – Presidential Suite, room 320
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Saturday, July 15th
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8:00am – 9:30
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Breakfast
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Meade
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9:00
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Registration opens
Sea-esta Cove (Respite Room) opens
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Foyer
Chuckatuck
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9:30
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After the Diagnosis - Now What? The Role of Healthcare Advocates in Managing Patient Care – Hear how a Lysosomal Center approaches patient care, how a healthcare advocate can help, get tips on handling insurance denials
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Stephanie Cagle MS, Emory University
Discussion - All
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10:30
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Break
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Foyer
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10:45
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Putting the Educational Puzzle Together – Explore the educational resources available & how they can help you and your child
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Gigi Durr, ESE Inclusion Specialist
Discussion - All |
12:00 |
Group Photo
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photo location TBD
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12:30
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Lunch
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Constant’s Wharf & Veranda
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1:45
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Butterfly Ceremony – A special remembrance of those who have earned their Butterfly Wings since our last time together and honoring all our MLD Angels
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photo location TBD
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2:15
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Building the MLD Journey Toolbox - Possible Head to Toe Roadblocks – Explore and discuss issues that can come up along the MLD journey and possible solutions to have in your toolbox
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Panelists
- Maria Escolar MD, UPMC 
- Adeline Vanderver MD, CHOP 
- Sarah Chagdon MD, CHKD
Discussion - All
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3:15
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break
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Foyer
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3:30
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CBD Oil - Education & discussion – Explore the creation of Hailey’s Hope and learn about types of CBD Oil & dosing
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Jason Cranford, Flowering Hope Foundation (via live web)
Discussion - all
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4:30 |
Pulling It All Together ... Group Hug
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Everyone
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6:45
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MLD children ... Gather in Chuckatuck for formation of Celebration Parade
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7:00
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Parade and MLD Family Beach Party
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Kilby
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10:00-12:00
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MLD After Hours ... Put the kids to bed, kick off your shoes, and come on up to join us for an informal time of sharing and conversation.
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MLD Central – Presidential Suite, room 320
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tbd - to be determined
Member of the MLD Foundation's Medical and Scientific Advisory Board (MSAB) or the MLD Foundation Board (fiduciary)
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Sunday, July 16th
Sunday is an optional social day.
Hotel checkout is at noon.
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Thank you to our sponsors, service, & grant providers:
who through their sponsorships, grants, and support are making this conference much more affordable for the attending families.
We also wish to thank the individual families for their donations to the scholarship fund.
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Industry and Academia Attendees
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Name |
Institution |
Location |
Title/Specialty |
Michael Babcock PhD
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BioMarin Pharmaceutical
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San Leandro, CA
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Discovery Scientist & Biologist
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Stephanie Cagle MS
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Emory University
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Atlanta, GA
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Genetic Counselor
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Randell Walton
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Soulumination
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Seattle, WA
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Photographer
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Sarah L. Chagdon MD
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Children’s Hospital of the King’s Daughters
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Norfolk, VA
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Pediatric Neurologist
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Jason Cranford (via live web)
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Flowering Hope Foundation
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Boulder, CO
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Founder and CBD Botany Specialist
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Brett Crawford PhD
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BioMarin Pharmaceutical
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Novato, CA
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Staff Scientist
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Erika De Boever PhD
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GSK - GlaxoSmithKline
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Raleigh-Durham, NC
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Sr. Director, Rare Diseases Clinical Development
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Gigi Durr
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Hernando County School District
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Spring Hill, FL
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ESE Inclusion Specialist
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Maria Escolar MD *
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Univ. of Pittsburgh Medical Center
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Pittsburgh, PA
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Developmental Pediatrician, Director - Program for the Study of Neurodevelopment in Rare Disorders (NDRD)
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Francesca Fumagalli MD
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San Raffaele Hospital, Telethon Institute for Gene Therapy (SR-TIGET)
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Milano, Italy
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Neurologist Consultant
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Michael Gelb PhD
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University of Washington
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Seattle, WA
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Professor of Chemistry and Biochemistry
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Magdalena Harrington PhD
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Shire Pharmaceuticals
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Lexington, MA
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Director, Health Economics and Outcomes
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Mark Lenker
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Shire Pharmaceuticals
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Washington, DC
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Director, US Government Relations and Public Policy
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Inez Loyd
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Social Security Administration
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Norfolk, VA
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Public Affairs Specialist
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Joseph Phillips PhD
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Armagen
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Calabasas, CA
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Sr. VP & Head of Pharmaceutical Development
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Andrew Shenker MD PhD
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GSK - GlaxoSmithKline
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Philadelphia, PA
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VP, Metabolic Disease Area Head
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Dean Suhr
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MLD Foundation
Dad to Lindy and angel Darcee
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West Linn, OR
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President & co-Founder
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Teryn Suhr
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MLD Foundation
Mom to Lindy and angel Darcee
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West Linn, OR
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Executive Director & co-Founder
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Paul Szabolcs MD
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Univ. of Pittsburgh Medical Center
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Pittsburgh, PA
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Chief, Blood and Marrow Transplant & Cellular Therapy
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Adeline Vanderver MD *
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Children’s Hospital of Philadelphia
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Philadelphia, PA
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Pediatrician, Neurologist, Director of Leukodystrophy Center of Excellence
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Margaret Wasilewski MD
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Shire Pharmaceuticals
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>Lexington, MA
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Global Clinical Development Lead for Rare Disease Neuroscience
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Tara West RN MSN CPNP
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Duke University Medical Center
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Durham, NC
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PBMT Cellular Therapy Program
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