Metachromatic Leukodystrophy Education

QUICK JUMPS
• Conversations™ about MLD ... interactive discussions surrounding MLD.
• MLD Family Conference™ videos ... recordings from recent family conferences
• Italian Gene Therapy with HSCT Clinical Trial ... research & trial details
• Brains for Brain introduction ... introduction to B4B and the MLD Core

Conversations™ ... a series of video interviews discussing topics related to MLD and those dealing with MLD. They run from 20 minutes to an hour and are presented in an easy to comprehend conversational style. No fancy charts or long medical terms - just plain talk that you can use!

Conversations™	Autoselect for Computer & iPhone	Use These Links only if the other fails (loads .wmv files)
Gene Therapy with HSCT – Research & Clinical Trial Dr. Alessandra Biffi Institute San Raffaele, Milano Italy, 2010-03	Click Here	Click Here
Stem Cell Transplants Dr. Paul Orchard Institute of Human Genetics, University of Minnesota, 2009-12	Click Here	Click Here
Practical Care Dr. Maria Escolar Neurodevelopmental Function in Rare Disorders, University ofNorth Carolina, 2009-02	video being edited coming soon	video being edited coming soon
Introduction to the Brains for Brain MLD Core Initiative Dr. Maurizio Scarpa & Dr. David Begley co-founders, Brains for Brain Consortium	Click Here	Click Here
Brains for Brain MLD Core Project Initiative Dr. Maurizio Scarpa University of Padova, Italy, 2010-02	video being edited coming soon	video being edited coming soon
Newborn Screening for Lysosomal Disease Dr. Rodney Howell University of Miami/Chair of Committee on Heritable Disorders in Newborns and Children ... NICHD-NIH, 2010-02	Click Here	Click Here
Gene Therapy & Mutations Dr. Tony Rupar Children’s Health Research Institute/Bethany's Hope Leukodystrophy Research Laboratory, London Ontario Canada, 2010-02	coming soon	coming soon
Neurology of MLD Dr. Lawrance Charnas University of Minnesota, 2010-02	video being edited coming soon	video being edited coming soon
Natural History Studies Dr. Krägeloh-Mann & Dr. Kehrer Universitäts-Kinderklinik, University of Tübingen, Germany, 2010-03	video being edited coming soon	video being edited coming soon

MLD Family Conference™ Videos

The following videos are from our June 2009 MLD Family Conference held in Valley Forge Pennsylvania. Scroll down to see videos from our March 2009 Munich MLD Family Conference.

We are using a new video hosting technique that should automatically select the right movie for your computer & Internet bandwidth or iPhone. Click on a link and follow the instructions.

MLD Family Conference™ Valley Forge - June 2009	Autoselect for Computer & iPhone	Use These Links only if the other fails (loads .wmv files)
Welcome, Doctor & Family Introductions Dean Suhr, President & Co-Founder - MLD Foundation	Click Here	Click Here
MLD-101: Overview, Genetics, & Diagnostic Testing Dr. David Wenger	Click Here	Click Here
PRACTICAL CARE
Understanding Seizures & Spasms Dr. Marc Patterson	Click Here	Click Here
Practical Care Panel - Audience Discussion/Q&A Dr. Maria Escolar, Dr. Julie Hauer, Dr. Marc Patterson	Click Here	Click Here
Legal & Financial Planning Lois Nafziger, Attorney	Click Here	Click Here
Angel Flight - People Flying People in Need presented by Dean Suhr, President, MLD Foundation	Click Here	Click Here
Make a Wish® Foundation Paulette Battenfelder, Regional Executive Director, Philadelphia & Susquehanna Valley	Click Here	Click Here
RESEARCH UPDATES
Clinical Trial Phases Dean Suhr	Click Here	Click Here
Newborn Screening for MLD Dr. Zhang, Genzyme Corp.	Click Here	Click Here
Gene Therapy Hematopoietic Stem Cell Gene Therapy with Lentiviral Vector Dr. Maria Sessa	Click Here	Click Here
Gene Therapy Intracerebral Gene Therapy Dr. Maria Sessa for Dr. Patrick Aubourg	Click Here	Click Here
Enzyme Replacement Therapy Phase I/II Clinical Trial Report & Overview of the proposed Phase II/III international Clinical Trial Dr. Marc Patterson	Click Here	Click Here
Cord Blood Transplantation (Stem Cell Transplants) Dr. Paul Szabolcs	Click Here	Click Here

Click here to learn more about our recent MLD Family Conference in Munich.

Please let us know if you have trouble viewing any of these videos. Click here to send and email - Please note Windows or Mac and what browser you are using.

	QuickTime Format			Windows Media Format
MLD Family Conference - Munich 2009	Cable fast	DSL medium	Dial-Up slow	Cable fast	Podcast	iPhone
PRACTICAL CARE
Practical Care for your MLD Affected Loved one
RESEARCH UPDATES
MLD-101: Basic science, genetics and diagnostics
Transplant Therapies: Bone Marrow & Stem Cell Transplants
Enzyme Replacement Therapy: Phase I/II Clinical Trial Report & Phase II/III international Clinical Trial Discussion

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