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2011 MLD Family Conference™ AGENDA

Preston – Melbourne, Australia, Saturday March 19th

Sponsored by the MLD Foundation

as of March 4th, 2011- subject to change

Saturday March 19th

12:30

Doors open - sign in & registration

Rydges Bell City Hotel, 215 Bell Street, Preston VIC 3072, Map Click to view map to hotel

13:00

Welcome & Introductions

Dean Suhr, President & Co-Founder, MLD Foundation

MLD 101 ... What is Metachromatic Leukodystrophy


13:30


What is MLD?
  - Neurology
  - Genetics
  - Testing - diagnosis, mutations

Newborn Screening

Preimplantation Genetic Diagnosis


Dean Suhr, President & Co-Founder, MLD Foundation

Prof. John Hopwood, Adelaide Women's & Children's Hospital

MLD Research & Therapy Updates ... the search for a MLD cure


14:15


Current Research

Developing Therapies & Clinical Trials
- Stem Cell Transplants
- Enzyme Replacement Therapy
- Gene Therapy
- Substrate Reduction


Prof. John Hopwood, Adelaide Women's & Children's Hospital

Dean Suhr, President & Co-Founder, MLD Foundation
15:00   break

Practical Living with MLD ... the practical aspects of day to day life with MLD


15:15

 


Panel & Group Discussion on various aspects of caring for a loved one with MLD.

topics tbd based on family input at meeting - could include:
- Seizures
- Palliative care
- Pain management
- Medications
- Hospice
- other resources

 


- Prof. John Hopwood, Adelaide Women's & Children's Hospital
- Melissa Heywood, Palliative Care, Royal Children's Hospital
- Andrea Murphy, Very Special Kids
- Sarah Connolly, Social Work Dept, Royal Children's Hospital
- Teryn Suhr, Executive Director & Co-Founder, MLD Foundation

17:30


Resources
- Make a Wish® Foundation - Australia


- Christina Kelly, Community Liasion Officer, Make-A-Wish® Australia

17:45


Resources
- Australian Leukodystrophy Support Group
- MLD Foundation



- Pam, ALDS Family Advocate, ALDS - Australian Leukodystrophy Support Group
- Teryn Suhr, Executive Director & Co-Founder, MLD Foundation

18:30

Hosted Group Dinner

JD's Restaurant - Bell City Meeting Complex


20:00


MLD After Hours


Room tba


Sunday, March 20th

Hotel checkout is 11:00am.


Thank you to our collaborators, donors, & grant providers:
ALDS    Shire HGT    Mac's Team       

Australian Leukodystrophy Support Group, Shire HGT, Mac's Team, and Olivia's Walk who through their collaboration, donations,
and grants 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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