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MLD Videos

QUICK JUMPS
Recent MLD Family Conference™ Videos ... Recent conference videos in smartphone and HD formats.
MLD Conversations™ ... interactive discussions surrounding MLD.
Get Muddy for MLD ... Teryn Gets Muddy to Fight MLD #FMLD.
Older MLD Conversations™ ... interactive discussions surrounding MLD.
Older MLD Family Conference™ videos ... recordings from older family conferences


MLD Conversations™ ... a series of video interviews discussing topics related to MLD and those dealing with MLD. They run from 20 minutes to an hour and are presented in an easy to comprehend conversational style. No fancy charts or long medical terms - just plain talk that you can use!

MLD Conversations™
Description
Newborn Screening

Newborn Screening for MLD - July 2016

July 2016, 66 min
Newborn Screening

Development and pilot study update for a MLD Newborn Screen. Federal & State policy, ACHDNC, RUSP, RUSP Roundtable

Prof. Micahel Gelb, Adjunct Professor of Biochemistry - University of Washington
Seattle, WA

Newborn Screening Policy - May 2016

May 14, 2016, 24 minutes
Newborn Screening

Newborn Screening Policy presentation made at the May 2015 Emerging and Translational Biology of Leukodystrophies Conferernce at Kennedy Kreiger Institute in Baltimore, MD in partnership with GLIA.

Dean Suhr, President - MLD Foundation
West Linn, OR USA

Newborn Screening Pilot Study Launch Announcement - May 2016

May 31, 2016, 8 minutes
Newborn Screening

Announcing the MLD Newborn Screening Pilot Study

Teryn Suhr, Executive Director - MLD Foundation
West Linn, OR USA

Newborn Screening - Screen Development Update, July 2015

July 2015, 12 min
Newborn Screening

An update on the MLD Foundation work to develop a newborn screening test for MLD including an interview with Dr. Michael Gelb.

Teryn Suhr, Executive Director - MLD Foundation
West Linn, OR USA

MLD Conversation™

Medical Cannabis, part 1

June 2015, 20 min
MLD Conversation™

Medical cannabis/CBD oil. How to access, determine strain and dose, assure quality & consistency, legalities, where do you start, etc. (part 1)

Constance Finley, Founder - Constance Theraputics
Oakland, CA USA

Medical Cannabis, part 2

June 2015, 39 min
MLD Conversation™

Medical cannabis/CBD oil. How to access, determine strain and dose, assure quality & consistency, legalities, where do you start, etc. (part 2)

Constance Finley, Founder - Constance Theraputics
Oakland, CA USA

PGD: Preimplantation Genetic Diagnosis with IVF - In Vitro Fertilization

2010, 14 min
MLD Conversation™

A conversation with Dr. Mark Hughes, founder of the Genesis Genetics institute, about PGD - Preimplantation Genetic Diagnostics, a test just before IVF to determine the non-affected embryos to implant.

Dr. Mark Hughes, - Genesis Genetics
Detroit, MI USA

Gene Therapy with HSCT – Research & Clinical Trial

2010, 21 min
MLD Conversation™.

Gene Therapy with HSCT – Research & Clinical Trial Dr. Alessandra Biffi Institute San Raffaele, Milano Italy, 2010-03

Dr. Alessandra Biffi, - Institute San Raffaele
Milano, Italy


MLD Family Conference™ Videos ... Recorded live from the MLD Family Conference – just as if you had been there! Lots of discussion, hands on sharing, and audience interaction.

MLD Family Conference™ Videos
Description
2016 MLD Family Conference™, Tarrytown NY

Welcome & Family Introductions

July 2016 , 46 min
2016 MLD Family Conference™, Tarrytown NY

Welcome to MLD Family Conference™ 2016 - Tarrytown, New York. Family and speaker introductions.

Dean & Teryn Suhr, - MLD Foundation

MLD Care Panel Discussion

July 2016 , 101 min
2016 MLD Family Conference™, Tarrytown NY

Panel and family discussion about MLD care issues. Includes long discussion on GI issues.

Hauer, West, Charnas, - Boston Childrens, Duke, Novartis

Acupuncture & Chinese Medicine

July 2016 , 66 min
2016 MLD Family Conference™, Tarrytown NY

Acupuncture, accupressure, and Chinese medicine as alternative therapies for MLD.

Shannon Moy LAc MAOM, - Serenity Accupuncture
Golden Valley, MN

Essential Oils

July 2016 , 44 min
2016 MLD Family Conference™, Tarrytown NY

Essential oils for MLD.

Adrian Moy, AA, -
Golden Valley, MN

Communication Challenges

July 2016 , 74 min
2016 MLD Family Conference™, Tarrytown NY

An open and very frank discussion about how to share with friends, family, loved ones ... and ourselves.

Brett & Heidi Robertson, parents to Lily - MLD Family™

Medical Cannabis - 2016 Family Conference Discussion

July 2016 , 23 min
2016 MLD Family Conference™, Tarrytown NY

Medical cannabis & CBD oil. A discussion and sharing of experiences by MLD families. How are you using CBD oil? How do you determine strain, dose and assure quality & consistency? Legalities and practical issues. Reporting, studying, and sharing results.

Dean Suhr, President - MLD Foundation
West Linn, OR

MLD Biology & Therapy Approach Overview - July 2016

July 2016 , 68 min
2016 MLD Family Conference™, Tarrytown NY

An overview of the science & biology of MLD, and the approaches to therapies.

Brett Crawford PhD, Staff Scientist - Biomarin Pharamceutical
Novato, CA

Newborn Screening for MLD

July 2016 , 66 min
2016 MLD Family Conference™, Tarrytown NY

Development and pilot study update for a MLD Newborn Screen. Federal & State policy, ACHDNC, RUSP, RUSP Roundtable

Prof. Micahel Gelb, Adjunct Professor of Biochemistry - University of Washington
Seattle, WA

MLD Therapy & Clinical Trial Updates

July 2016 , 102 min
2016 MLD Family Conference™, Tarrytown NY

Updates on current therapies and clinical trials for MLD ... transplant, ERT, gene therapy ... Kurtzberg, Wasilewski, Aiuti ... Duke, Armagen, Shire, San Rafaelle, TIGET, GSK

various, - MLD Foundation

Gene Therapy Update - July 2016

July 2016 , 34 min
2016 MLD Family Conference™, Tarrytown NY

Update on the gene therapy clinical trial in Milano Italy.

Alessandro Aiuti MD PhD, Director, Immunohematology Pediatric Unit, Chief Research Coordinator and Clinical Research Unit - San Rafaelle Institute
Milano, Italy

Transplant Update - July 2016

July 2016 , 15 min
2016 MLD Family Conference™, Tarrytown NY

Update on transplant and oligodendrocyte cells (O-cells) for MLD.

Joanne Kurtzberg, MD, Chief Science Officer - Duke
Raleigh, NC

2016 MLD Family Conference™ invitation

May 2016 , 90 seconds
2016 MLD Family Conference™, Tarrytown NY

2016 MLD Family Conference™ invitation

Teryn Suhr, Executive Director - MLD Foundation

2015 MLD Family Conference™, Newark DE

Welcome and Family Introductions

July 2015 , 45 min
2015 MLD Family Conference™, Newark DE

Welcome to the 2015 MLD Family Conference™ in Newark, Delaware including introductions of the attending families.

Dean Suhr - President, Teryn Suhr - Executive Director - MLD Foundation
West Linn, OR USA

Help, My Brain's a Mess ... Neurometabolic aspects of MLD

July 2014 , 53 min
2015 MLD Family Conference™, Newark DE

Neurometabolic aspects of caring for a loved one with MLD. Topics include medications, procedures, PAID, seizures, etc.

panel: Prang, West, Patterson, -

Ideas When Things Don't Work

July 2015 , 49 min
2015 MLD Family Conference™, Newark DE

Discussion about how to solve common MLD care problems and frustrations ... Panel is MLD Family™ members.

Panel, - MLD Families

Family Dynamics

July 2015 , 48 min
2015 MLD Family Conference™, Newark DE

Various family members who are not the primary caregiver share their thoughts and observations about MLD in their family.

Panel, - MLD Families

Medical Cannabis

July 2015 , 56 min
2015 MLD Family Conference™, Newark DE

Medical cannabis & CBD oil. A discussion with a leading CBD oil manufacturer and the MLD families. How are you using CBD oil? How do you determine strain, dose and assure quality & consistency? Legalities and practical issues. Reporting, studying, and sharing results.

Dean Suhr, President - MLD Foundation
West Linn, OR

Leukodystrophy Center of Excellence

July 2015 , 37 min
2015 MLD Family Conference™, Newark DE

An overview of the new (May 2015) Leukodystrophy Center of Excellence at CHOP, Children's Hospital of Philadelphia. The CHOP LCE is becoming a model for other LCE's internationally.

Erin Prange, MSN CRNP, Director of LCE Clinical Operations - CHOP - Children's Hospital of Philadelphia
Philadelphia, PA USA

PAID - Paroxysmal Autonomic Instability with Dystonia

July 2015 , 12 min
2015 MLD Family Conference™, Newark DE

An example and brief discussion about PAID – Paroxysmal Autonomic Instability with Dystonia

Panel: Prang, West, Patterson, -

Beyond Words

July 2015 , 39 min
2015 MLD Family Conference™, Newark DE

Levi shares his creativity and passion for the rare disease community through conference photos, stories, and experiences. We are making a memory ...

Levi Gershkowitz, Photographer and Storyteller - Living In The Light of Rare Disease
New Jersey

Living in the Light™

July 2015 , 20 min
2015 MLD Family Conference™, Newark DE

Living in the Light of Rare Diseases ... storytelling through photography. http://www.frompatienttoperson.com

Levi Gershkowitz, Photographer and Storyteller - Living In The Light of Rare Disease
New Jersey

Angel Ceremony

July 2015 , 13 min
2015 MLD Family Conference™, Newark DE

Our 2015 MLD Angel Ceremony and butterfly release honoring and remembering those we lost to MLD since our 2014 conference, and also honor the all the parents in attendance who lost a loved one to MLD.

Teryn Suhr, Executive Director - MLD Foundation
West Linn, OR

#FMLD Western Roundup

July 2015 , 9 min
2015 MLD Family Conference™, Newark DE

The entrance parade of the #FMLD Cowboys & Cowgirls along with a few candids from the #FMLD Roundup dinner party.

MLD Kiddos, -

MLD 101 - Biochemistry of MLD

July 2015 , 31 min
2015 MLD Family Conference™, Newark DE

A bit of the biochemistry and science behind MLD - explained in a way that everyone can understand. Dr. Crawford reviews the various therapy strategies and how they interactive with the defective cells.

Brett Crawford, PhD, Staff Scientist - Biomarin
Novato, CA

An Overview of MLD – diagnostics, genetics, forms, ect.

July 2015 , 35 min
2015 MLD Family Conference™, Newark DE

Dr. Wenger is the gold standard for MLD diagnostics and testing in the US. He explains the genetic, diagnostic techniques, pseudo-deficiency (1 in 12 of us have it too!), and more.

David Wenger, PhD, Director - Lysosomal Lab - Jefferson University
Philadelphia, PA

Newborn Screening - Screen Development, Policy Update, RUSP Roundtable

July 2015 , 23 min
2015 MLD Family Conference™, Newark DE

An update on the MLD Foundation work to develop a newborn screen test for MLD including an interview with Dr. Michael Gelb, an overview of federal and state policy for NBS, the RUSP process, and an introduction to the MLD Foundation's RUSP Roundtable initiative which includes a discussion about viable therapy.

Dean Suhr - President, Teryn Suhr - Executive Director - MLD Foundation
West Linn, OR USA

MLD Gene Therapy - Milano Update

July 2015 , 47 min
2015 MLD Family Conference™, Newark DE

An update on the Phase I/II Milano Gene Therapy clinical trial, including 5 year data and discussion of next steps.

Dr. Alessandra Biffi, Pediatrician, Head of Unit - TIGET, San Rafaelle Institute
Milano, Italy

2014 MLD Family Conference™, Pittsburgh

Welcome

July 2014 , 16 min
2014 MLD Family Conference™, Pittsburgh.

Welcome to the 2014 MLD Family Conference™ in Pittsburgh, PA

Dean Suhr, President - MLD Foundation
West Linn, OR

Family Introductions

July 2014 , 35 min
2014 MLD Family Conference™, Pittsburgh.

Attendees introduce themselves and their families

The families, - MLD Foundation
West Linn, OR

MLD Foundation Logo & Mission

July 2014 , 4 min
2014 MLD Family Conference™, Pittsburgh.

The MLD Foundation logo and We C.A.R.E. mission

Teryn Suhr, Executive Director - MLD Foundation
West Linn, OR

MLD Landscape

July 2014 , 82 min
2014 MLD Family Conference™, Pittsburgh.

MLD Landscape - Understanding the disease, genetics, diagnostics, forms & progression

Panel - Charnas, Wenger, Rupar, -

Newborn Screening

July 2014 , 25 min
2014 MLD Family Conference™, Pittsburgh.

Newborn screening update - developing a screen for MLD, policy at state and federal level, what we can & should do for MLD newborn screening

Dean Suhr, Teryn Suhr, - MLD Foundation
West Linn, OR

Patient Data

July 2014 , 45 min
2014 MLD Family Conference™, Pittsburgh.

Patient Reported Data, Registries, & Natural History Studies - How it benefits you and researchers

Dean Suhr, President - MLD Foundation
West Linn, OR

MLD Foundation Discussion

July 2014 , 28 min
2014 MLD Family Conference™, Pittsburgh.

Growth, sustainability, fund raising tools and support for the MLD Foundation

Christine Hoffmann, MLD Board member and MLD mom -
Scottsdale, AZ

Research & Clinical Trial Updates

July 2014 , 87 min
2014 MLD Family Conference™, Pittsburgh

Research, Therapy, & Clinical Trial Updates

Panel: Crombez, Shenker, Biffi, Rupar, -

Family Dynamics - Couples

July 2014 , 84 min
2014 MLD Family Conference™, Pittsburgh

How MLD affects couples ... an open discussion of how some MLD couples have responded

MLD Families, -

Family Sharing - open discussion

July 2014 , 85 min
2014 MLD Family Conference™, Pittsburgh

Open sharing of ideas, tips, techniques, questions, concerns, travel (49:12), green goo (22:10), etc.

MLD Families, -

Where is the Help? & Decisions, Decisions!Decisions

July 2014 , 111 min
2014 MLD Family Conference™, Pittsburgh

How to find and access resources and help ... and how to make decisons

MLD Families, -

Glow Beach Party

July 2014 , 9 min
2014 MLD Family Conference™, Pittsburgh

Parade of Prince and Princesses into the Glow Beach Party

MLD Prince and Princesses, - MLD Foundation

2013 MLD Family Conference™, Parsippany NJ

Welcome and Family Introductions

August 2013 , 63 min
2013 MLD Family Conference™, Parsippany NJ.

Welcome to the 2013 MLD Family Conference™ in Parsippany, NJ

Dean Suhr, President - MLD Foundation
West Linn, OR

MLD Genetics and Your Extended Family

August 2013 , 83 min
2013 MLD Family Conference™, Parsippany NJ.

What is MLD ... genetics, biochemistry, progression, genotype/phenotype, etc.

, - MLD Foundation Medical & Scientific Advisory Board

Newborn Screening is More Than a Test

August 2013 , 27 min
2013 MLD Family Conference™, Parsippany NJ.

Newborn screening ... more that a screening test

Dean Suhr, President - MLD Foundation
West Linn, OR

Dream Foundation - Adult Wishes

August 2013 , 23 min
2013 MLD Family Conference™, Parsippany NJ.

Dream Foundation - granting adult wishes

Dean Suhr, President - MLD Foundation
West Linn, OR

2012 MLD Family Conference™, Charlotte

Welcome and Family Introductions

June 2012 , 17 min
2012 MLD Family Conference™, Charlotte.

Welcome to the 2012 MLD Family Conference™ in Charlotte, NC

Dean Suhr, President - MLD Foundation
West Linn, OR

MLD - What We Know ... and What We Don't -- an overview of MLD

June 2012 , 138 min
2012 MLD Family Conference™, Charlotte.

What we know and what we don't, an overview of MLD

Panel, -

Bench to Bedside - Developing Therapies

June 2012 , 106 min
2012 MLD Family Conference™, Charlotte.

What does it take to get a therapy from the lab to the bedside?

Panel, -

Update on Therapy Development

June 2012 , 90 min
2012 MLD Family Conference™, Charlotte.

What are the MLD therapies in development, and what is their development status

Panel, -

Newborn Screening

June 2012 , 22 min
2012 MLD Family Conference™, Charlotte.

Newborn Screening for MLD - It's not just a legislative issue

Dean Suhr, President - MLD Foundation
West Linn, OR

What's an IEP?

June 2012 , 82 min
2012 MLD Family Conference™, Charlotte

All about IEP's and what the school system in the US must offer to your child

Panel, -

Practical Living With MLD

June 2012 , 144 min
2012 MLD Family Conference™, Charlotte

How to Live with MLD, Optimizing Quality of Life, Family Sharing

Panel, -

 



Older MLD Conversations™ ... These are historical conversations, in older formatsthat may not work well today. Some of the information may be a bit dated. For research updates please see current MLD Conversations and the most recent MLD Family Conference Research Update videos.

MLD Conversations™

Autoselect for Computer & iPhone
Use These Links only if the other fails

(loads .wmv files)

Gene Therapy with HSCT – Research & Clinical Trial
Dr. Alessandra Biffi
Institute San Raffaele, Milano Italy, 2010-03

Click Here

Stem Cell Transplants
Dr. Paul Orchard
Institute of Human Genetics, University of Minnesota, 2009-12

Click Here

Click Here

Introduction to the Brains for Brain MLD Core Initiative
Dr. Maurizio Scarpa & Dr. David Begley
co-founders, Brains for Brain Consortium

Click Here

Click Here

Newborn Screening for Lysosomal Disease
Dr. Rodney Howell
University of Miami/Chair of Committee on Heritable Disorders in Newborns and Children ... NICHD-NIH, 2010-02

Click Here

Click Here


Older MLD Family Conference™ Videos

The following videos are from our June 2009 MLD Family Conference held in Valley Forge Pennsylvania. These videos are in older formats that may not play well today.

MLD Family Conference™
Valley Forge - June 2009

Autoselect for Computer & iPhone
Use These Links only if the other fails

(loads .wmv files)

Welcome, Doctor & Family Introductions
Dean Suhr, President & Co-Founder - MLD Foundation

Click Here

Click Here

MLD-101: Overview, Genetics, & Diagnostic Testing
Dr. David Wenger

Click Here

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PRACTICAL CARE
   

Understanding Seizures & Spasms
Dr. Marc Patterson

Click Here

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Practical Care Panel - Audience Discussion/Q&A
Dr. Maria Escolar, Dr. Julie Hauer, Dr. Marc Patterson

Click Here

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Legal & Financial Planning
Lois Nafziger, Attorney

Click Here

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Angel Flight - People Flying People in Need
presented by Dean Suhr, President, MLD Foundation

Click Here

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Make a Wish® Foundation
Paulette Battenfelder, Regional Executive Director, Philadelphia & Susquehanna Valley

Click Here

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RESEARCH UPDATES
   

Clinical Trial Phases
Dean Suhr

Click Here

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Newborn Screening for MLD
Dr. Zhang, Genzyme Corp.

Click Here

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Gene Therapy
Hematopoietic Stem Cell Gene Therapy with Lentiviral Vector
Dr. Maria Sessa

Click Here

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Gene Therapy
Intracerebral Gene Therapy
Dr. Maria Sessa for Dr. Patrick Aubourg

Click Here

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Enzyme Replacement Therapy
Phase I/II Clinical Trial Report &
Overview of the proposed Phase II/III international Clinical Trial
Dr. Marc Patterson

Click Here

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Cord Blood Transplantation (Stem Cell Transplants)
Dr. Paul Szabolcs

Click Here

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