Friday May 31st
9:00 to 10:00 am OPENING SESSION
10:00 to 10:30 am Coffee etc. Break
(Exhibit Area)
10:30 am to Noon
HDSA's FPOCUS ON THE FAMILY
Sponsored by Pfizer
Moderator: Dr. Martha Nance
Panel: Person with HD, Caregiver andYoung Adult At-Risk
LUNCH ON YOUR OWN
Noon to 1:00 pm National Youth Alliance Lunch
1:00 to 2:15 pm WORKSHOPS
- The HD Primer: An Introductory Session
- Understanding the Genetics of HD
- Managing Early Symptoms of HD
- HD Research: From Mouse to Man
- Caregiving Skills Lab (See Description Below)
- HD Family: Helping Parents Talk to Kids
- YOUTH: An Introduction to HD
2:30 to 3:45 pm WORKSHOPS
- The Science of HD: An Advanced Session on HD
- HD Research: New Compounds
- Managing Mid-Stage Symptoms of HD
- Nutrition and HD
- Caring for the Caregiver
- Coping with Grief and Loss in HD
- YOUTH: Living in an HD Home
4:00 to 5:15 pm
SHARING & NETWORKING SESSIONS
These are informal networking sessions where participants with similar interests can come together and share insights and experiences.
- Newly Diagnosed (Diagnosis in past 2 years)
- Spouses of Newly Diagnosed
- Persons with HD
- Caregivers
- At-Risk - Adults
- At-Risk - Youth
- Parents of At-Risk Children
- Managing Two Generations of HD
- People who have Tested Negative
- Tested Positive (Predictive test that was positive)
5:30 to 5:45 pm WORDS OF INSPIRATION
6:00 to 7:00 pm CONVENTION RECEPTION
7:30 to 8:30 pm EVENING PROGRAM
DINNER ON YOUR OWN
Saturday, June 1st
7:00 to 8:00 am WALK FOR THE CURE
8:30 to 8:45 am WORDS OF INSPIRATION
9:00 to Noon HDSA RESEARCH FORUM
Co-Sponsored by AstraZeneca
10:15 to 10:45 am Coffee etc. Break (Exhibit Area)
LUNCH ON YOUR OWN
1:00 to 2:00 pm HDSAs CENTER OF EXCELLENCE FORUM
2:15 to 3:30 pm WORKSHOPS
- Managing Late Stage Symptoms of HD
- HSG Clinical Trials
- Medication and Alternative Treatment for Symptom Management in HD
- Community Care Alternatives
- Caregiving Skills Lab *
- Depression & Suicide
- YOUTH: What does being At-Risk Mean to Me?
3:30 to 3:45 pm Coffee etc. Break (Exhibit Area)
3:45 to 5:00 pm WORKSHOPS
- Family Planning in HD
- Life Changing Decisions: When to Say When
- Exercise & Physical Therapy in HD
- Speech & Swallowing Strategies
- Understanding Behavior in HD
- Palliative Measures in End Stage HD
- YOUTH: Predictive Testing
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Saturday, June 1st continued
6:30 pm to 1:00 am GENERATION 2000 GALA: Reception, Dinner,Awards Presentation and Dancing - National Youth Alliance Silent Auction
Sunday, June 2nd
8:00 to 8:45 am INTERFAITH SERVICE
9:00 to 10:15 am CONTINENTAL BREAKFAST & ROUNDTABLES
- Genetics
- HD Research
- Medical & Long-Term Care Insurance
- Advocating for HD
- Physical Therapy
- Social Workers
- HDSA Centers of Excellence
- Cognitive & Behavioral Issues
- Medication and Treatment
- National Youth Alliance
- Social Security
- Family Planning
- Caregiver Issue
- Speech & Swallowing
- Support Groups
- Nutrition
10:30 to 11:30 am SHARING & NETWORKING SESSIONS
- Newly Diagnosed (Diagnosis in past 2 years)
- Spouses of Newly Diagnosed
- Persons with HD
- Caregivers
- At-Risk - Adults
- At-Risk - Youth
- Parents of At-Risk Children
- Managing Two Generations of HD
- People who have Tested Negative
- People who have Tested Positive (Predictive testing that was positive)
11:45 am to Noon CLOSING CEREMONY
*********
New to the Convention this year will be the Caregiving Skills Lab. Four information/ training stations will set up to teach caregiving skills to families. Included will be:
- Physical therapy station teaching balance, gait and transfer techniques
- Speech therapy station teaching modifications for people with swallowing difficulties,
- Occupational therapy station teaching families adaptive skills for people impaired in activities of daily living,
- Medical equipment station instructing families about adaptive equipment and their uses.
The Caregiver Skills Lab will be opened during scheduled sessions on Friday and Saturday. No sign up in necessary, but because of the "hands-on"nature of the lab, please consider coming to another session if the first one you attend is too full.
Sessions for young people will be expanded at the Convention. In each breakout session there will be a special track for participating youth. These topics are specifically designed to target the issues that young people in HD families face. |
