Annual Meeting

November 15, 2015,

2015 Annual Meeting

 

 
ALD Connect held its annual 2015 meeting at the Wyndham Hotel in Boston, MA on October 01-03.

Below you will find photos from our meeting as well as video recordings of all the presentations.

If you have any questions about any of the content seen below, please feel free to ask us atinfo@aldconnect.org

 

PHOTOS:


 
 

 
Starting this year, 2015, ALD Connect will be
                  giving 2 awards at its annual meeting                         
 
   AWARD #1
                   “ALD Connect Ambassador of the Year” 
 
 
Description:The Volunteer of the Year Award is an honor presented by ALD Connect to recognize a member who, through example and accomplishment, has provided outstanding volunteer service to ALD Connect over the last year with the goal of advancing our organization’s central mission. 

Purpose: To recognize the dedication, commitment, enthusiasm, initiative, or innovation of ALD Connect community members in helping the organization further its goals of eradicating ALD.
 

 
 
 AWARD # 2
“Ann Moser ALD Community Award”
 
Description: The Ann Moser ALD Community Award is an honor presented by ALD Connect to recognize noteworthy work that has been done in the ALD community.
 
Purpose: To recognize unusually impactful contributions to the ALD community at large; To recognize major milestones in the history of the disease.

The Ann B. Moser
ALD Community Award

 
This annual award has been
named in honor of
Ann B. Moser
 
in recognition of her pioneering
work as a scientist, a humanist,
and a lifelong friend of the ALD community
 
Ann B. Moser
2015 

 
 
                                        About Ann Moser
 
Home town: Wakefield, MA

In 1961 I received a bachelor’s degree in biochemistry from Radcliffe College. During my time at Radcliffe, I was a technician researching cholesterol metabolism in Dr. Konrad Bloch’s laboratory at Harvard University. 

After graduation my first job was a laboratory technician with my first post-graduate employer, mentor and later husband, Dr. Hugo W. Moser, in the research laboratories at the McLean Hospital ( Jordi Folch, Director),  Mass. General Hospital, and the Eunice Kennedy Shriver Center.

In 1976 I joined the John F. Kennedy Institute (later Kennedy Krieger Institute) as a senior technician. In 1982, I became an assistant in neurology. Since 1991, I have been working as a research associate in neurology.

I have been investigating lipid metabolism in inborn errors of metabolism for more than 40 years. Along with my late husband, Dr. Hugo W. Moser, we developed the original methods for quantitation of very long-chain fatty acids (VLCFA) in plasma and cells by gas chromatography that are used to diagnose X-linked adrenoleukodystrophy (X-ALD) and related peroxisomal disorders. My collaborators and I also developed, tested, and validated the methodology for newborn screening of these diseases by LC-MS/MS using punches from Guthrie blood spot cards. This assay, which measures the VLCFA content of lysophosphatidylcholine, has recently been added to the routine newborn screening program of the state of New York. 

 

Below are video recordings of the presentations given at the annual meeting:

THURSDAY, OCTOBER 01 

1

 

Introduction

Presented by Florian Eichler                                                                      .

                                                       

2

 

Work Group 1: Governance & Finance

Presented by Brian Chandler and Kathleen O’Sullivan-Fortin 
 

3

 

Work Group 2: Outcomes 

Presented by Ali Fatemi

 

4

 

Work Group 3: Biomarkers 

Presented by Stephan Kemp and Kendrick Goss 

 

5

 

Work Group 4: Patient Engagement

Presented by Bob Wyborn

 

6

 

Panel Discussion of Work Groups

Panel: Kendrick Goss, Bob Wyborn, Kathleen O’Sullivan-Fortin, Kathy Zackowski, Ali Fatemi

7

 

Industry Advisory Council (Panel)

Panel: Sanjay Magavi, Kendrick Goss, Sheila Dewitt, Mark Shearman, Jim Lillie, Yoh Terada
                                                       

8 Natural History Study of ALD (Panel)

Panel: Keith Van Haren, Kathy Zackowski                      

9

 

Virtual Biorepository & Telemedicine for ALD (Panel)

Virtual Biorepository Presented by Alex Sherman, Troy Lund 

Telemedicine Presented by patirica Musolino, Amel Karaa 

10

 

Open Discussion: What would you like ALD Connect to work on in 2016? 

Moderator: Florian Eichler 

11

 

Closing remarks 

Presented by Florian Eichler 
 

FRIDAY, OCTOBER 02

1
 
Introduction
 
 
2

 

How do we Collaborate and Work Together Across the Leukodystrophies?

Presented by Florian Eichler 

3
 
Working Together: NeuroBank
 
 
4

 

Working Together: GLIA

Presented by Adeline Vanderver 

 

5

 

Shared Goals for Leukodystrophies: LCN

Presented by Anna Grantham 

 

6

 

Shared Goals for Leukodystrophies: NTSAD

Presented by Susan Kahn 

 

7

 

Working together: FARA

Presented by Jen Farmer 

 

8

 

Trials for Leukosytrophies around The World

Presented by: Keith Van Haren, Stephan Kemp
 

9

 

Working Together: Recognitions & Awards

 

 
 
   

Rachel Salzman 

 


Ann B. Moser

 


Elisa Seeger 
Amber Salzman 
Jean Kelley
Janis Sherwood
Patricia Chapman 
     

Patient Learning Academy

10

 

Patient Learning Academy Introduction 

Presented by Florian Eichler 

 

11

 

Getting Insurance Coverage for Leukodystrophies

Presented by Jennifer Semaras
 

12

 

Sibshops: The Impact of Chronice Illness upon Siblings

Presented by Katie Weagle
 

13

 

Physical Therapy and Sensory-Motor Integration 

Presented by Kellan Carrig 
 

14

 

Pain Management and Spasticity 

Presented by Julie Hauer 

 

15

 

Management of Bladder Problems 

Presented by Pablo Gomery  

 

     
16

 

Strategies to Improve Cognition 

Presented by Amy Morgan & Lauren Pollack 

 

 
17

 

Endocrine Issues and their Management in ALD/AMN

Presented by Nicholas Tritos & Rose Marino 
 

18

 

Young ALD Carriers (Y.A.C.)

Presented by Taylor Kane 

 

19

 

What is the Patient Portal? How to use it? What is missing on the portal? 

Presented by Razina Aziz-Bose
 

     
     
     
     
   

SATURDAY, OCTOBER 03

1

 

Scientific Session Overview 

Presented by Florian Eichler 

2

 

Gene Therapy for Matochromatic Leukodystrophy 

Presented by Alessandra Biffi 

3

 

Working with NCATS on Drug Development 

Presented by Patricia Dranchak 

4

 

Nanomedicine and Drug Delivery for the Leukodystrophies 

Presented by Sujatha Kannan 

5

 

Challenges for trial design in the Leukodystrophies (Panel)

 

6

 

Thyromimetrics in Adrenoleukodystrophy 

Presented by Tom Scanlan

7

 

Therapeutic Approaches to Hypogonadal Syndromes/Hypomyelinating Diseases

Presented by Stephanie Seminara 

     
Past Events: