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2010 MLD Family Conference™ AGENDA

Sponsored by the 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 the MLD Foundation
- Policy, adovcacy, awarenes, etc.
- Establishing a Japanese affilate of the 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  Boinx Software 

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 the MLD Foundation. Check with your tax advisor about the deductibility of any expenses associated with this conference.

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