Education Faces of MLD

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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.


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 understand!

Topic Area
Description
Newborn Screening

Newborn Screening Implementation and Policy - July 2018

2018, 37 min
Newborn Screening

Newborn screening starts with a lab test but then needs to be implemented into the 50+ state public health systems in the US. This session discusses what we need to have and do above and beyond the lab test (see separate video) to implement MLD newborn screening into all fifty states, 6 territories, and the military including developing a Standard of Care, improving diagnostic consistency, RUSP nomination, state lab implementation, and our desires to implement MLD NBS internationally.

Dean Suhr, President - MLD Foundation
Plymouth Meeting, PA

Newborn Screening – MLD Screen Progress Update - July 2018

2018, 29 min
Newborn Screening

A very scientific in-depth explanation and update on the biochemical lab screen test development, validation, pilot study, and strategy underway in the state of Washington.

Michael Gelb, Professor, PhD - University of Washington
Plymouth Meeting, PA

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

Movement

TIPS - Physical Therapy

2018, 27 min
Movement

This is a video produced by Dean Suhr for another organization, however, it applies to MLD patients as well. This video shows the different ways you can work with your child to keep their muscles relaxed, loose and not contracted depending on their age. It can also be a wonderful way to connect with your child through movement and touch. It may be helpful to share this with your care team of therapists for them to perhaps learn something new while working with your child.

Haley Snyder, PT - National Tay-Sachs & Allied Diseases Association

TIPS - Chest Vest

2018, 13 min
Movement

This is a video produced by Dean Suhr for another organization, however, it applies to MLD patients as well. This video is a brief description of a form of respiratory therapy that simulates manual percussive therapy to loosen up secretions in the lungs. It is known as The Vest, Airway Clearance Vest, High Frequency Chest Wall Oscillation, and SmartWay Airway Clearance System, and other names depending on the manufacturer.

Lorelei Sandoval - National Tay-Sachs & Allied Diseases Association

TIPS - Range of Motion

2018, 43 min
Movement

This is a video produced by Dean Suhr for another organization, however, it applies to MLD patients as well. This video shows the different ways you can work with your child to keep their muscles relaxed, loose and not contracted depending on their age. It can also be a wonderful way to connect with your child through movement and touch. It may be helpful to share this with your care team of therapists for them to perhaps learn something new while working with your child.

Lorelei Sandoval - National Tay-Sachs & Allied Diseases Association

TIPS - G-Tubes

2018, 24 min
Movement

This is a video produced by Dean Suhr for another organization, however, it applies to MLD patients as well. This video is a comprehensive review of an intervention that can help your child or loved one when swallowing food becomes too difficult. It is a family choice and there is no right or wrong answer when it comes to making a decision for your child. Patricia Beaudry, RN explains G-Tubes: A to Z with Isaac in this video.

Patricia Beaudry, RN - National Tay-Sachs & Allied Diseases Association

MLD Conversation™

Medical Cannabis - Constance Finley, 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 - Constance Finley, 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


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
2018 MLD Family Conference™, Plymouth Meeting PA

Welcome & Introductions

2018 , 37 min
2018 MLD Family Conference™, Plymouth Meeting PA

Welcome and Introductions of all conference attendees

What's This Thing Called MLD? ... Part 1: Science

2018 , 49 min
2018 MLD Family Conference™, Plymouth Meeting PA

The basics of MLD ... MLD-101 ... The science of MLD explained in a highly interactive manner

Brett Crawford PhD, Biomarin & Marc Patterson MD, Mayo Clinic

What's This Thing Called MLD? ... Part 2: Clinical

2018 , 70 min
2018 MLD Family Conference™, Plymouth Meeting PA

Clinical issues ... what does MLD mean to the patient in terms of clinical issues, forms of progression, etc.?

Brett Crawford PhD, Biomarin & Marc Patterson MD, Mayo Clinic

What's This Thing Called MLD? ... Part 3: Therapies

2018 , 29 min
2018 MLD Family Conference™, Plymouth Meeting PA

Current therapies for MLD including an overview of potential therapeutic approaches and therapies in clinical trial ... including ERT/enzyme replacement therapy and gene therapy.

Brett Crawford PhD, Biomarin & Marc Patterson MD, Mayo Clinic

Introduction to Orchard Therapeutics

2018 , 20 min
2018 MLD Family Conference™, Plymouth Meeting PA

An introduction to Orchard Therapeutics. Early in 2018 Orchard acquired the Milano (Italian) gene therapy IP (intellectual property) from GSK (GlaxoSmithKline). This is their first public presentation to the MLD community. OTL-200 is the MLD project name.

Sue Rogers, VP – Global Distribution, Patient Access & Support Services - Orchard Therapeutics

Newborn Screening – MLD Screen Progress Update

2018 , 29 min
2018 MLD Family Conference™, Plymouth Meeting PA

A very scientific in-depth explanation and update on the biochemical lab screen test development, validation, pilot study, and strategy underway in the state of Washington.

Michael Gelb, Professor, PhD - University of Washington

Newborn Screening Implementation and Policy

2018 , 37 min
2018 MLD Family Conference™, Plymouth Meeting PA

Newborn screening starts with a lab test but then needs to be implemented into the 50+ state public health systems in the US. This session discusses what we need to have and do above and beyond the lab test (see separate video) to implement MLD newborn screening into all fifty states, 6 territories, and the military including developing a Standard of Care, improving diagnostic consistency, RUSP nomination, state lab implementation, and our desires to implement MLD NBS internationally.

Dean Suhr, President - MLD Foundation

We Need You Involved in Rare Disease & MLD Advocacy

2018 , 42 min
2018 MLD Family Conference™, Plymouth Meeting PA

An overview and discussion of why we need you involved in MLD and rare disease advocacy at both the state and federal levels. Includes some simple and quick ways to get involved.

Dean Suhr, President - MLD Foundation

What MLD Parents Should Know About Government Benefits

2018 , 26 min
2018 MLD Family Conference™, Plymouth Meeting PA

Government benefits (SSDI, Medicaid, etc.) ... what benefits might be available for your loved one, how to access those benefits, how to appeal a decision, etc.. Mr. Polonsky is an attorney specializing in special needs issues as they relate to government benefits.

Alan Polonsky, Esq. - Polonsky and PolonskyAttorneys at Law

Butterfly Remembrance Ceremony

2018 , 11 min
2018 MLD Family Conference™, Plymouth Meeting PA

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

Teryn Suhr, Executive Director - MLD Foundation

Make Memories at MLD Family Conference 2018

4/15/18 , 2 min
2018 MLD Family Conference™, Plymouth Meeting PA

Please join us in Plymouth Meeting, just west outside of Philadelphia, PA on July 6th and 7th, 2018. Registration link is just below the video.

MLD Foundation

2017 MLD Family Conference™, Suffolk VA

2017 Family Conference Images

2017 , 18 min
2017 MLD Family Conference™, Suffolk VA

Images from the 2017 MLD Family Conference™ in Suffolk VA.

Soulumination

Welcome & Introductions

2017 , 39 min
2017 MLD Family Conference™, Suffolk VA

Welcome and Introductions of all conference attendees

What's In A Name? – MLD Overview – part 1

2017 , 70 min
2017 MLD Family Conference™, Suffolk VA

Leukodystrophy, lysosomal disease, incidence ... and more

Brett Crawford, PhD, Staff Scientist - Biomarin Pharmaceuticals

What's In A Name? – MLD Overview – part 2

2017 , 40 min
2017 MLD Family Conference™, Suffolk VA

Leukodystrophy, lysosomal disease, incidence ... and more

Brett Crawford, PhD, Staff Scientist - Biomarin Pharmaceuticals

Gene Therapy Update - 2017

2017 , 55 min
2017 MLD Family Conference™, Suffolk VA

Milano Gene Therapy research update, outcome summary, and future plans.

Francesa Fumagalli MD PhD - San Rafaelle -TIGET

Incidence, Prevalence, & Inheritance of MLD

2017 , 11 min
2017 MLD Family Conference™, Suffolk VA

A brief look at the incidence, prevalence, and inheritance of MLD incluiding a look at US, First World and Global numbers. This video was extracted from What's in A Name part 2.

Dean Suhr - MLD Foundation

MLD Research Updates - Full Session

2017 , 46 min
2017 MLD Family Conference™, Suffolk VA

Hear and discuss the latest going ons in MLD research and learn the steps in the research process. Includes updates on ERT, transplant, small molecule, Outcomes Research, and NDRD. Gene Therapy is discussed in its own video.

Wasilewski, Harrington, Szabolcs, Escolar, Phillips

Research Updates - ERT - Enzyme Replacement Therapy, Shire

2017 , 3 min
2017 MLD Family Conference™, Suffolk VA

A very brief update from Shire on their Enzyme Replacement Therapy Clinical Trial and outcome monitoring.

Margaret Wasilewski, Global Clinical Development Lead for Rare Disease Neuroscience - Shire Pharmaceuticals

MLD Research Updates - Outcomes & Progression

2017 , 24 min
2017 MLD Family Conference™, Suffolk VA

Presentation of outcome and progression data gathered from MLD Families by Shire.

Magdalena Harrington PhD, Director, Health Economics and Outcomes - Shire Pharmaceuticals

MLD Research Updates - NDRD Overview

2017 , 5 min
2017 MLD Family Conference™, Suffolk VA

A brief overview of the Program for the Study of Neurodevelopment in Rare Disorders (NDRD) that Dr. Escolar has operated for many years.

Maria Escolar MD, Developmental Pediatrician, Director - Program for the Study of Neurodevelopment in Rare Disorders (NDRD) - NDRD - Children's Hospital of Pittsburgh/UPMC

MLD Research Updates - Transplant

2017 , 13 min
2017 MLD Family Conference™, Suffolk VA

A presentation and discussion about the state of the art in cellular transplant.

Paul Szabolcs MD, Chief, Blood and Marrow Transplant & Cellular Therapy - Univ. of Pittsburgh Medical Center

MLD Research Updates - Armagen - Using the Insulin Receptor

2017 , 8 min
2017 MLD Family Conference™, Suffolk VA

An update from Armagen on their insulin receptor targeting to cross the blood-brain barrier along with a greeting from the CEO.

Joseph Phillips PhD, Sr. VP & Head of Pharmaceutical Development - Armagen

Navigating the Medicare Maze

2017 , 35 min
2017 MLD Family Conference™, Suffolk VA

Helping to understand and navigate the Medicare maze, including the Compassionate Allowance for expediting late infantile Medicaid applications.

Inez Lyod - Social Security Administration

Update on Newborn Screening for MLD

2017 , 47 min
2017 MLD Family Conference™, Suffolk VA

An update on the MLD NBS pilot Study in Washington and a discussion of next steps.

Prof. Michael Gelb, PhD - University of Washington

MLD and Rare Disease Advocacy

2017 , 20 min
2017 MLD Family Conference™, Suffolk VA

The importance and simplicity of helping MLD and Rare Disease advocacy including stories from those who have been active in 2017.

Dean & Teryn Suhr - MLD Foundation

MLD and Rare Disease Advocacy - Alberts

2017 , 3 min
2017 MLD Family Conference™, Suffolk VA

Laura Alberts shares about her experience with her husband Travis in DC during Rare Disease Week 2017

Laura Alberts - MLD Foundation

MLD and Rare Disease Advocacy - Hodgson/Pierce

2017 , 2 min
2017 MLD Family Conference™, Suffolk VA

Tony Hodgson shares about his experience in DC with Nancy and Michelle Pierce (his daughter) during Rare Disease Week 2017

Tony Hodgson - MLD Foundation

CBD Oil & Medical Marijuana – Education & Discussion

2017 , 60 min
2017 MLD Family Conference™, Suffolk VA

Education and discussion on the use of CBD oil for disease and symptom management. Jason is the inventor and supplier of the well know CBD variant, Hailey's Hope. He is able to ship to any US state and most countries.

Jason Cranford - Flowering Hope Foundation

After the Diagnosis ... Now What?

2017 , 39 min
2017 MLD Family Conference™, Suffolk VA

Hear how a Lysosomal Center approaches patient care, how a healthcare advocate can help, get tips on handling insurance denials

Stephanie Cagle, MS, CGC (Certified Genetic Counselor) - Emory Univ. School of Medicine

Putting the Educational Puzzle Together

2017 , 33 min
2017 MLD Family Conference™, Suffolk VA

Explore the educational resources available & how they can help you and your child

Gigi Durr, ESE Inclusion Specialist

Butterfly Remembrance Ceremony

2017 , 6 min
2017 MLD Family Conference™, Suffolk VA

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

Teryn Suhr, Executive Director - MLD Foundation

Building the MLD Toolbox

2017 , 73 min
2017 MLD Family Conference™, Suffolk VA

Building a MLD Toolbox to Address Possible Head to Toe Roadblocks – Explore and discuss issues that can come up along the MLD journey and possible solutions to have in your toolbox

Changdon, Escolar, Vanderver, West - panel discussion

Wrap Up & Closing Comments

2017 , 19 min
2017 MLD Family Conference™, Suffolk VA

Closing comments, wrap up and final thoughts.

Dean & Teryn Suhr - MLD Foundation

Parade of MLD Kids and SEA - Esta MLD Family Beach Party

2017 , 73 min
2017 MLD Family Conference™, Suffolk VA

See the 2017 parade of MLD kids in their finest beach decor ...

Bashing of the MLD Piñata

2017 , 19 min
2017 MLD Family Conference™, Suffolk VA

A MLD Family tradition ... beating up on MLD!

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

Essential Oils

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

Essential oils for MLD.

Adrian Moy, AA

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 & CBD - 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

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

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

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

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

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

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 & CBD Oil

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

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

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

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

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

#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

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

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

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

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

Family Introductions

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

Attendees introduce themselves and their families

The families - MLD Foundation

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

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

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

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

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

2012 MLD Family Conference™, Charlotte

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

 

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