MLD Family Conference™ ... Plymouth Meeting, Pennsylvania - 2018

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Registration Closed
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  Online registration for this conference closed on Monday, June 11. If you would still like to register we will try to accommodate you as best we can. Please contact us via email or at +1 503-656-4808.

LIVE WEBCAST: There will be plenty of space on the free live webcast, which will appear on the Conference Overview page during the conference.

*** We are sorry, due to planning and space constraints we cannot accommodate on-site registration or walk-in attendees. ***



2018 MLD Family Conference™ AGENDA

Sponsored by the MLD Foundation

July 6-7th in Plymouth Meeting, Pennsylvania

as of July 1, 2018 – subject to change ... See last year's agenda here


Friday, July 6th


Friday, July 6th

9:00am

Registration opens
Rockstar Green Room (Respite Room) opens
Light Continental Breakfast

10:00

Welcome & Personal Introductions

Dean Suhr, President, MLD Foundation **
Tery Suhr, Executive Director, MLD Foundation **
Everyone

10:15

What’s this Thing Called MLD? – An overview of MLD, it’s biology, diagnostics, and therapies ... lysosomal disease, natural history, genotype/phenotype correlations, biomarkers

facilitated by Brett Crawford Ph.D., BioMarinmember of one of the MLD Boards
Marc Patterson MD, Mayo Clinic * **
Discussion - All

12:00

Lunch (Friday Industry and academic experts photo)

 

1:00

Research & Clinical Trials in process  – hear and discuss the latest going ons in MLD research and learn the steps in the research process

  • - Clinical Trials ... Gene Therapy with Transplant & ERT
    - Other BioTech/Pharma ... increasing interest
    - Discussion ... how you can help & next steps
continued...

facilitated by Brett Crawford Ph.D., BioMarinmember of one of the MLD Boards
Marc Patterson MD, Mayo Clinicmember of one of the MLD Boards **
Discussion - All

2:30

Progress Toward a MLD Newborn Screen – Learn how the WA State NBS pilot is going and what are the next steps


Prof. Michael Gelb
, Univ. of Washington

Discussion - All

3:00

Break

3:15

Ladies Breakout, Men’s Breakouts – A time for those new and for those more experienced on the MLD journey to come together in a small, caring, confidential environment

Academia & Industry Breakout– A brief brainstorm of priorities for future MLD research, clinical, and advocacy efforts

MLD Parents/Caregivers


Academia and Industry Attendees

4:15

What MLD Parents Should Know About Government Benefits – Learn about Social Security Disability requirements, SSD vs. SSI, Medicaid, as well as Special Needs and ABLE trusts.

Alan Polonsky Esq, SSD Attorney

5:00

Family Time

 

6:00

Dinner

 

9:00-12:00

MLD After Hours ...  ... You are invited to “MLD After Hours”. Kick off your shoes and join us for some informal conversation and sharing. Who knows, you might even find some surprises to pass the time!

 


Saturday, July 7th

8:00am – 9:30

Buffet Breakfast

 

9:00

Registration opens
Rockstar Green Room (Respite Room) opens

 

9:30

MLD & Rare Disease Advocacy – Explore the policy issues, learn how to make a difference that matters ... including Right to Try & Compassionate Use, ACA changes, etc.

Dean Suhr, MLD Foundation

Discussion - All

10:30

Break

 

11:00

Group Photo

 

11:00

Remembering Our MLD Angels – Butterfly Ceremony – A special remembrance of those who have earned their Butterfly Wings since our last time together ... and honoring all of our MLD Angels

All attendees, We will live stream the ceremony

12:30

Lunch

 

1:45

CBD Oil - Education & discussion – Adding to our knowledge about CBD ... from a Pharmacist patient perspective, and from you!

Nadia Bodkin Pharm.DMaxify Life

2:45

break

 

3:00

Hands On PT Session and MLD Family Care Discussion – Grab your MLD loved one for this hands on PT stretching session. If your MLD loved one is not here ask one of our kid Groupies if they’d like to have some stretching fun!

Elysia Gherlone DPT, Physical Therapist

Discussion - all

4:30

Group Discussion & Wrap Up

Everyone

5:15

Family time

 

6:45

Rockstars & Kid/Sib Groupies gather in Rockstar Green Room to prepare for Rockstars parade and grand entrance

Adult Groupies & Roadies gather in Chestnut Foyer

 

7:00

MLD Family Rockstars Grand Entrance and Introductions

 

10:00-12:00

MLD After Hours ... Please join us for “MLD After Hours”. Kick off your shoes and join us for some informal conversation and sharing. Who knows, you might even find some surprises to pass the time!

 


tbd - to be determined

member of one of the MLD Boards Member of the MLD Foundation's Medical and Scientific Advisory Board (MSAB) or the ** MLD Foundation Board (fiduciary)



Sunday, July 8th

Sunday is an optional social day.
Hotel checkout is at 11am
.

Thank you to our sponsors, service, & grant providers:

Shire Pharmaceuticals   Honoring Olivia   Soulumination   Dylan's Dinosaur Stomp  
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.


Industry and Academia Attendees

Name Institution Location Title/Specialty

Michael Babcock PhD

BioMarin Pharmaceutical

San Leandro, CA

Discovery Scientist & Biologist

Stephanie Cagle MS

Emory University

Atlanta, GA

Genetic Counselor

Randell Walton

Soulumination

Seattle, WA

Photographer

Sarah L. Chagdon MD

Children’s Hospital of the King’s Daughters

Norfolk, VA

Pediatric Neurologist

Jason Cranford (via live web)

Flowering Hope Foundation

Boulder, CO

Founder and CBD Botany Specialist

Brett Crawford PhD

BioMarin Pharmaceutical

Novato, CA

Staff Scientist

Erika De Boever PhD

GSK - GlaxoSmithKline

Raleigh-Durham, NC

Sr. Director, Rare Diseases Clinical Development

Gigi Durr

Hernando County School District

Spring Hill, FL

ESE Inclusion Specialist

Maria Escolar MD *

Univ. of Pittsburgh Medical Center

Pittsburgh, PA

Developmental Pediatrician, Director - Program for the Study of Neurodevelopment in Rare Disorders (NDRD)

Francesca Fumagalli MD

San Raffaele Hospital, Telethon Institute for Gene Therapy (SR-TIGET)

Milano, Italy

Neurologist Consultant

Michael Gelb PhD

University of Washington

Seattle, WA

Professor of Chemistry and Biochemistry

Magdalena Harrington PhD

Shire Pharmaceuticals

Lexington, MA

Director, Health Economics and Outcomes

Mark Lenker

Shire Pharmaceuticals

Washington, DC

Director, US Government Relations and Public Policy

Inez Loyd

Social Security Administration

Norfolk, VA

Public Affairs Specialist

Joseph Phillips PhD

Armagen

Calabasas, CA

Sr. VP & Head of Pharmaceutical Development

Andrew Shenker MD PhD

GSK - GlaxoSmithKline

Philadelphia, PA

VP, Metabolic Disease Area Head

Dean Suhr

MLD Foundation
Dad to Lindy and angel Darcee

West Linn, OR

President & co-Founder

Teryn Suhr

MLD Foundation
Mom to Lindy and angel Darcee

West Linn, OR

Executive Director & co-Founder

Paul Szabolcs MD

Univ. of Pittsburgh Medical Center

Pittsburgh, PA

Chief, Blood and Marrow Transplant & Cellular Therapy

Adeline Vanderver MD *

Children’s Hospital of Philadelphia

Philadelphia, PA

Pediatrician, Neurologist, Director of Leukodystrophy Center of Excellence

Margaret Wasilewski MD

Shire Pharmaceuticals

>Lexington, MA

Global Clinical Development Lead for Rare Disease Neuroscience

Tara West RN MSN CPNP

Duke University Medical Center

Durham, NC

PBMT Cellular Therapy Program

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

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