MLD Family Conference™ - MLD Foundation

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2010 MLD Family Conference™ AGENDA Sponsored by MLD Foundation August 15th, 2010 Tokyo Hilton Bay, Tokyo, Japan working agenda as of July 21st, 2010 - subject to change
Sunday August 15th
8:30	Doors open - sign in & registration, respite room opens	Hilton Tokyo Bay

9:00	Welcome & Introductions	Dean Suhr, President, MLD Foundation Hiroshi Takahashi, Japanese MLD Family network
9:15 9:45 10:15 10:30 11:00 11:30	PROGRESS IN MLD RESEARCH Overview of MLD - Neurology, Genetics, Diagnosis Enzyme Replacement Therapy for Lysosomal Storage Diseases break Gene Therapy for MLD Other MLD Research & Clinical Trial Update Panel Discussion and General Questions	Dr. Takashi Shimada, chair Dr. Yoshikatsu Eto, Professor and Director Department of Genetics & Genome Science, Tokyo Jikei University School of Medicine Dr. Torayuki Okuyama, National Center of Child Health and Development (NCD) Dr. Takashi Shimada , Professor and Chairman Department of Biochemistry and Molecular Biology, Department of Pediatrics, Division of Clinical Genetics, Director - International Exchange Center Nippon Medical School Dean Suhr, President, MLD Foundation Dr. Yoshikatsu Eto (Jikei Medical University) Dr. Torayuki Okuyama (Natl Res Inst Child Health Develop) Dr. Takashi Shimada (Nippon Medical School) Dean Suhr (MLD Foundation)
12:00	Lunch
13:30 14:00 14:30 15:00 15:15 16:15 16:50	PRACTICAL CARE Epileptic Seizure - diagnosis and treatments Nutrition Management - NG tube, GER, etc. Respiration Management - tracheotomy, etc. break Panel Discussion and General Questions MLD Foundation Session - Mission of MLD Foundation - Policy, adovcacy, awarenes, etc. - Establishing a Japanese affilate of MLD Foundation - next steps Closing remarks	Dr. Norio Sakai, chair Dr. Nagasawa Dr. Masaki Takayanagi Dr. Norio Sakai, Department of Pediatrics, Osaka University Graduate School of Medicine, Suita, Osaka, Japan Dr. Nagasawa Dr. Masaki Takayanagi Dr. Norio Sakai (Osaka University) Teryn Suhr (MLD Foundation) Dean Suhr, President, MLD Foundation Hiroshi Takahashi, Japanese MLD Family network
17:00 - 18:00	Informal reception
Thank you to our sponsors, service, & grant providers: Shire HGT, Mac's Team, The Stennis Foundation, Olivia's Walk, and Boinx Software 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.

Questions?
Contact Dean Suhr <deansuhr@MLDfoundation.org> +1 503-656-4808, USA: 1-800-617-8387, or FAX +1 503-212-0159

This conference is being organized by MLD Foundation. Check with your tax advisor about the deductibility of any expenses associated with this conference.

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