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Preliminary CONFERENCE AGENDA
as of 7/17/06- subject to change
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Friday July 28th
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12:30pm
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Doors open - sign in & registration
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Marriot Durham Civic Center
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1:00PM
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Day 1 - Welcome & Introductions
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MLD 101 - An Overview of Metachromatic Leukodystrophy
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Dr. Paul Orchard
Univ. of Minnesota
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break |
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3:15
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Industry & Resources
* FDA - drug & therapy approval process
* Social Security - benefits, eligibility, etc.
Resources for special times...
* Make a Wish
* Give Kids the World, etc.
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Jennifer Haglund, SSA
Cindy Williams
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Foundations - updates, focus, etc.
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6:00
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Hosted casual pizza/salad dinner
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location tbd
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Saturday July 29th
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8:30am
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Doors open - continental breakfast, sign in & registration
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Marriot Durham Civic Center
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9:00AM
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Day 2 - Welcome & Introductions
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9:15
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MLD Research Updates - Diagnosis, Therapy, and Research
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Duke University - stem cell replacement, oligodendrocyte research
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Dr. JoAnne Kurtzberg
Duke University
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break |
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Zymenex - enzyme replacement therapy
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Dr. Jens Fogh
Dr. Christian Meyer
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University of Minnesota - MLD cell line development, stem cell replacement
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Dr. Paul Orchard
Dr. Larry Charnas
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| 12:45 |
lunch |
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1:30
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Living with MLD ... Practical Care & Resource Panel
Living with the progression of MLD
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Dr. Maria Escolar
UNC Center for Development & Learning
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Progression & prognosis
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tbd
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Neurology
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tbd
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Orthopedics
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tbd
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break |
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3:45
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Advocacy for Your MLD Family Member
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4:30
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Call to Action - how we can help each other and accelerate a cure
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all
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5:00
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Formal meeting concluded
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6:00
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Hosted Group Dinner at Mama Dip's
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Chapel Hill
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Sunday July 30th
Sunday is an optional social day - no formal events are scheduled.
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