Family Conference Agenda

Objectives
ISMRD's Family Conference will enable families and caregivers of individuals affected by one of the Glycoprotein & Related Storage Diseases to meet, exchange information and gain access to the professionals attending the International Workshop.  This conference will be open to anyone who has a personal or professional interest in these diseases, but space will be limited, so please register as soon as possible if you are interested in attending. 

ISMRD will make every effort to ensure that no family who wishes to attend is excluded by limited financial resources.  For this reason we will offer limited scholarships to any family in need, regardless of national origin.  If you are interested in taking part in this conference, but need financial assistance, please complete our scholarship application. 

The following are highlights of what is planned for the conference:

• An evening reception on Thursday, April 1 for all attendees of the International Workshop and Family Conference.  This will provide an opportunity for families to meet with scientists, researchers, biotechnology representatives and medical professionals and enjoy a relaxing social evening with each other.
• An opportunity to view sessions of the International Workshop.  ISMRD will be allocated a limited number of seats in the workshop to allow Family Conference attendees to sit in on presentations and discussion by the workshop participants.
• Friday disease focus groups that will enable families with similar diagnoses to exchange information and ideas pertaining to their loved ones' particular situations.
• A gala Friday night dinner for all Family Conference registrants.
• Saturday informational sessions on Glycoprotein & Related Storage Diseases featuring presentations by many of the same scientists participating in the International Workshop.  These sessions will give our registered guests a broad overview of the current knowledge and future possibilities for these diseases.  Lunch is included!
• Sunday family panels and discussions will allow participants to share common ideas and resources and to map out the future for ISMRD.
• Children's activities planned for affected and healthy children attending with their parents.  ISMRD will schedule organized, supervised fun things to do for all children while their parents are involved in conference sessions Friday to Sunday (note: there will be no child care available Thursday, April 1 or in the evening hours).
• Free time during the four days to see the sights in Washington, D.C.
• A filmed record of the entire event to be made available at a later date as a souvenir and visual record of this exciting event.

Download a detailed Family Conference Program now! (summary shown below)

Hotel Floor Plan:

[click to enlarge]

Family Conference

Thursday, April 1:

1. Choice: sightseeing or sit in on workshop sessions 1-4
2. Reception for workshop attendees and families hosted by ISMRD

Friday, April 2:

1. Attend workshop sessions 1-3
2. Late afternoon disease-specific focus and discussion groups
3. Gala Dinner

Saturday, April 3:

What is Known? Moderator: Gretchen Oswald, M.S., C.G.C., ISMRD Board

1. Overview of Lysosomal Storage Diseases
2. Molecular Aspects of Glycoproteinosis Diseases
3. Animal Models and Relevance to Humans
4. Clinical Involvement by Disease

   Lunch (sponsored by ISMRD)

Saturday, April 3: What Can Be Done? Moderator: John Forman, ISMRD Board

5. Global Approaches to LSD Research, Understanding and Public Awareness
6. Research Needs and Objectives for the Future
7. Therapeutic Potentials (BMT, ERT, Gene Therapy, Substrate Deprivation, etc):
8. Managing the Symptoms
9. Blood and Tissue Banking: Taking Control of the Research Pipeline

Sunday, April 4: What Can I Do? Moderators: Mark Stark & Elizabeth Cunha, ISMRD Board members

1. Life Options for Families and Children (family panel discussion)
2. ISMRD: Opportunities for the Future (ISMRD Board)
3. Advocacy & Action: What Can We Do Together? (family panel discussion)
4. The Road Ahead: What Next?

Family Conference Saturday Session Presenters include:
Kelly Moremen, Ph.D. | Steven Walkley, Ph.D. | Alessandra d’Azzo, Ph.D. | Stuart Kornfeld, M.D. Dag Malm, M.D., Ph.D. | Marc Patterson, M.D. | Professor John Hopwood, Ph.D. | Sharon Terry (President, The Genetic Alliance) | Mark Haskins, V.M.D., Ph.D. and others to be announced.

A separate program of activities will be available April 2-4, 2004 for all youth over the age of 3 attending the conference with their families. More information to come.