"Bridging Yesterday, Today, and Tomorrow"


April 25 - 28, 2002

White Plains, New York, United States



Thursday, April 25, 2002 Allied Summit Meeting

Saturday, April 27, 2002 GALA Dinner, Dance, and Silent Auction


Thursday, April 25, 2002

6:00 – 6:45 PM New Family Meeting and Newly Bereaved Family Meeting

7:00 – 9:00 PM Welcome Dinner

Friday, April 26, 2002

9:30 – 11:30 AM Medical and Research Update

  • Dr. Richard Proia
Reported on research at the National Institutes of Health concerning the role of activated inflammatory cells in mice affected with Sandhof disease and its implications for possible treatment of these diseases in conjunction with other therapies.
  • Dr. Edwin Kolodny
Discussed a possible treatment option for LOTS (late-onset Tay-Sachs) patients using a substrate inhibitor called OGT-918.
  • Dr. Joanne Kurtzberg
Discussed work on stem cell transplants in children with metabolic disorders at Duke University Medical Center. While this therapy has been effective for children with Krabbe's disease transplanted at a young age, it has been inconclusive witrh regards to diseases like Tay-Sachs and Sandhof.
  • Dr. Paula Leone
Reported on the progress of phase1 trials of gene therapy with regards to Canavan Disease at the Cell and Gene Therapy Center of the University of Medicine and Dentistry of New Jersey/Robert Wood Johnson Medical School.
  • Dr. Edwin Kolodny
Reported on the experimental use of calcium acetate as a treatment for children affected with Canavan disease conducted at the New York University Medical Center.

Noon - 12:45 PM Lunch

1:00 – 2:50 PM Home Care, Part I: feeding, nutrition, reflux, and seizure management

1:00 – 2:50 PM Future of NTSAD, Part I

3:00 – 5:00 PM Parent Peer Group Meeting and Grandparent & Extended Family Meeting

6:00 – 7:00 PM Dinner

7:30 – 8:30 PM Commemoration: a candlelight ceremony honoring children who have died


There are stars whole light reaches the earth only after they themselves have disintegrated and are no more.

Let this light signify the ever present love and memory of our children that will always live in our hearts.

At the same time, let it symbolize the renewal we must seek as we continue without our beloved children and strive to walk on with others.

7:30 – 8:30 PM Canavan Families Meeting

Saturday, April 27, 2002

9:30 – 10:45 AM The State of NTSAD

11 - Noon "A Prescription for Living" by Dr. Bernie Siegel

Noon - 1 PM Lunch

1:15 – 2:55 PM Home Care, Part II: respiratory care, constipation, physical therapy, and special equipment

1:15 – 2:55 PM Sibling Workshop

1:15 – 2:55 PM "Art of Healing" by Dr. Bernie and Bobbie Siegel

3 – 4:30 PM Future of NTSAD, Part II: advocacy of rare diseases

3 – 4:30 PM Communicating in Relationships by Janice Steers

4:30 – 6 PM Men’s Group Meeting and Women’s Group Meeting

6 – 7 PM Dinner

Sunday, April 28, 2002

9 – 11 AM Farewell Breakfast