MLD Family Conference™ - MLD Foundation

To see the Conference Overview - click here

Online Registration closes July 13th.

2010 MLD Family Conference™ AGENDA Sponsored by MLD Foundation August 6th-7th, 2010 in Cleveland, Ohio as of August 1st, 2010 - subject to change (click here to view last year's agenda)
Friday August 6th
12:30	Doors open - sign in & registration, respite room opens	Hilton Garden Inn, Mayfield Village - Cleveland, Ohio

1:00	Welcome & Introductions	Dean Suhr President, MLD Foundation

MLD 101 ... an overview of Metachromatic Leukodystrophy
1:15 2:15 2:45	What is MLD? - Neurology - Genetics - Testing - diagnosis, mutations Newborn Screening for Lysosomal Diseases ... Krabbe disease: the NYS model Preimplantation Genetic Diagnosis	Dr. Lawrence Charnas - Pediatric Neurologist, University of Minnesota Dr. Patricia Duffner, Professor of Neurology & Pediatrics, University of Buffalo School of Medicine; Clinical Director - Hunter James Kelly Research Institute, Dr. Mark Hughes, Molecular Biochemist, Director - Genesis Genetics, Detroit MI (via video)
3:10	break
3:25 4:00 4:45	Brains for Brain - MLD Core Research Projects Research into basic science and emerging therapies Open discussion ... Questions and Answers Make a Wish Foundation®	Dr. Maurizio Scarpa - University of Padova, Dept. of Paediatrics, Italy Kelly Kleinschmidt, Executive Director - The Make-A-Wish Foundation® of Greater Ohio, Kentucky, and Indiana Northern Ohio Region (specfic presentor tbd)
5:30-5:45	Wrap Up	Dean Suhr
6:00-6:30	free time

7:00	Hosted casual dinner	Hilton Garden Inn

Saturday August 7th
6:30am	Hotel breakfast buffet (for hotel guests)
8:30am	Doors open - respite room opens

9:00AM	MLD Foundation Update - recent activities, legislation, etc.	Dean Suhr, President & Co-Founder, Teryn Suhr, Executive Director & Co-Founder, MLD Foundation

MLD Research & Therapy Updates ... the search for a MLD cure
9:30AM	Regulation, NIH/FDA NIH Research initiative, New drug & therapy approval process, Orphan Drug Progam changes	Dean Suhr, President & Co-Founder, MLD Foundation
9:45AM	Bone Marrow & Stem Cell Transplants transplantation as a therapy and transplant in conjunction with other therapies	Dr. Vinod K. Prasad, MD, MRCP (London) Attending Physician Pediatric Bone Marrow and Stem Cell Transplant Service Duke University Medical Center, Durham NC
10:15	break
10:30 11:00	Gene Therapy ... Repairing the defective genes * Hematopoietic Stem Cell Gene Therapy Trial with Lentiviral Vector ... and ... Intracerebral Gene Therapy Enzyme Replacement Therapy ... Providing the ARSA enzyme What is Enzyme Replacement Therapy? Open discussion ... Questions and Answers - Question about research underway - Shire's HGT-1111 results & HGT-1110 plans	Dr. Maurizio Scarpa Dept. of Paediatrics - University of Padova, Italy Dr. Marc Patterson, Mayo Clinic, Rochester MN (via video)

12:00	lunch

Practical Living with MLD ... the practical aspects of day to day life with MLD
1:15 1:50 2:30	- Why Advocate for your child? - Developing a Home Care Plan for your MLD child - Vignette #1: Seizures in MLD - Vignette #2: Spasticity/Muscle Spasms in MLD	- Dr. Kendra Bjoraker, PhD Neuropsychology, Colorado Children's Hospital - Dr. Julie Hauer, Pediatric Palliative & Pain Care Consultant, Boston, MA - Dr. Lawrence Charnas - Pediatric Neurologist, University of Minnesota - Dr. Lawrence Charnas - Pediatric Neurologist, University of Minnesota
3:00	break
3:15	Panel Discussion ...The MLD Journey A casual, free-flowing, interactive discussion between attending families and the panelists.	- Dr. Arthur Lavin, Pediatrician - Advanced Pediatrics, Cleveland OH - Lauren Drobnjak, Physical Therapist - InvoHealthcare Assoc., Cleveland OH - Dr. Neil Friedman M.B.Ch.B, Neurologist - Cleveland Clinic - Jennifer Palmer RN - Pediatric Team Leader, Hospice of the Western Reserve - Dr. Kendra Bjoraker, PhD Neuropsychology, Colorado Children's Hospital - Dr. Julie Hauer, Pediatric Palliative & Pain Care Consultant, Boston, MA - Dr. Lawrence Charnas - Pediatric Neurologist, University of Minnesota and all of the families ...

5:00-5:30	Call to Action - how we can help each other and accelerate a cure	all

5:30-6:15	free time

6:15	Hosted Group Dinner (leave hotel at 6:15, dinner at 6:30)	Claddagh Irish Pub, Legacy Village, Lyndhurst, OH map to restaurant
* tba - to be announced
Sunday, August 9th Sunday is an optional social day. Buffet breakfast is provided for hotel guests. Hotel checkout is at noon.
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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