Thursday, April 19, 2001

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

7:00 – 9:00 PM Welcome Reception

Celeste, who is 20 months old and has Canavan Disease, takes a break by the pool. We met many families at the conference this year, affected by a diverse range of diseases ranging from Tay-Sachs, LOTS (Late Onset Tay-Sachs), Sandhoff, Canavan, Niemann Pick Type A, Gaucher, and Metachromatic Leukodystrophy.

Friday, April 20, 2001

9:00 – 9:30 AM Welcome and Opening Remarks

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

• Carrier Screening and Prenatal Testing for Genetic Diseases
• Gene Therapy Trials in the USA for Children with Canavan Disease
• Enzyme-Competent Therapy through Bone Marrow Transplant for Tay-Sachs and Sandhoff Infants
• Current State of Neural Stem Cell Research

11:45 – 1:00 PM Lunch

1:00 – 2:30 PM Home Care, Part I

• Feeding Options (oral feeding and feeding tubes)
• Reflux
• Constipation and Elimination
• Special Needs Equipment ( wheelchairs, car seats, bath aids)

1:00 – 2:30 PM Getting on the Same Course - Communicating Effectively

1:15 – 2:30 PM "Kids Have Feelings Too": a Sibling Workshop

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

6:00 – 7:15 PM Dinner

7:30 – 8:30 PM Commemoration - a ceremony honoring children who have passed away

Six-year old Samantha returned for her third family conference. She made new friends and had a lot of fun at the Healthy Siblings Camp. She also attended the Sibling Workshop. Here, Samantha shows us her special shirt in honor of her brother Nick, who passed away of Tay-Sachs last year. Samantha had the honor of lighting the first candle at the commemoration ceremony.

Saturday, April 21,2001

8:30 – 10:00 AM Grief Panel: "Journeys of Love, Loss, and Remembering"

(perspectives from parents, grandparents, siblings, and caregivers of affected children)

8:30 – 10:00 AM Advocating for Your Children, Yourselves and NTSAD

10:00 – 12:00 PM NTSAD Business Meeting (budget, elections, staff reports, committees)

12:00 – 1:15 PM Lunch

1:30 – 3:00 PM Home Care, Part II

• Seizure Management
• Respiratory Care
• Positioning and Physical Therapy
• Long-term issues for a special needs child: school, respite care, nursing care facility
• Late palliative care issues for end-of-life management and decisions

1:30 – 3:00 PM Moving to a Higher Course: Focus on Renewal and Growth of the Organization

3:15 – 4:30 PM How to Maintain Your Cool: Stress Management Workshop

3:15 – 4:30 PM Pregnancy and Alternatives

• Prenatal diagnosis - Chorionic Villus Sampling (CVS) and amniocentesis
• Preimplantation genetic diagnosis
• Adoption

4:45 – 6:15 PM Men’s Group Meeting + Women’s Group Meeting

Our friend, Jim, holding DJ. Everyone loves the hospitality suite! It's a place where parents share stories and renew friendships over a cup of coffee. There is also a child care room for affected children. Many bereaved parents return to conferences and volunteer in this child care room as a way of honoring their own children. Caregivers such as nurses and physical therapists also take turns holding affected children.

Sunday, April 22, 2001

9:00 – 11:00 AM Farewell Breakfast