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Register for the Valley Forge MLD Family Conference™

Online Registration closes July 13th.
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2010 MLD Family Conference™ AGENDA

Sponsored by the 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  

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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