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For anyone in the New England area this sounds like it will be a very informative and eventful day! There will be sessions for parents of a child/children with JHD and a Youth Forum! See my separate email on the Youth Fourm or see newsletter source, below! The next registration deadline is 10/23. Registration form is available here:
Source: Fall 2006 Newsletter: http://www.hdsa-ne.org/Portals/0/Articles/fall06newsletter.pdf
Registration Form and Youth Permission Slip
New England Regional HDSA Chapter's
Annual HD Education Day
Saturday, November 4, 2006
8:30 - 3:45
Saturday, November 4, 2006
8:30 - 3:45
University of Massachusetts Medical School
Worcester, MA.
Registration
Registration Fee
Mail In Registration:
Early Bird - $20.00 per person Must be postmarked by October 14, 2006.
Regular Registration – $25.00 per person. Must be postmarked by October 23, 2006.
Mail In Registration:
Early Bird - $20.00 per person Must be postmarked by October 14, 2006.
Regular Registration – $25.00 per person. Must be postmarked by October 23, 2006.
At the Door - $30.00 per person.
Registration includes: Continental Breakfast and Lunch Buffet
The most important event of the year is our Annual Education Day. It is important because our guest speakers provide our members with information about Huntington’s disease that is not always readily available to them, but more importantly it gives our members the opportunity to meet and talk with other people who have the same problems, frustrations, fears, determination and hope. This year, the members of the Education Committee have chosen speakers who we feel have the knowledge to present the type of information our members have asked for, or have shown an interest in, throughout the year.
Schedule
8:30 AM – 9:00 AM Coffee and Registration
9:00 AM – 9:50 AM Research Update
10:00 AM – 10:50 AM Workshop Session One
A. Juvenile Huntington’s Disease
B. History of HD
C. Fitness and Healthy Eating
10:50 AM – 11:05 AM Break and Exhibit Viewing
11:05 AM – 11:55 AM Workshop Session Two
A. Everything you ever wanted to know about Genetic Testing
B. Social Security Disability Insurance
C. Living with a positive test result
12:00 Noon – 1:30 PM Lunch and Exhibit Viewing
1:30 PM - 2:20 PM Workshop Session Three
A. Talking to Kids About HD
B. How Changes in Cognition Impact Behavior
2:40 PM – 3:30 PM Comic Relief
3:30 PM – 3:45 PM Wrap Up and Evaluations
9:00 AM – 9:50 AM Research Update
10:00 AM – 10:50 AM Workshop Session One
A. Juvenile Huntington’s Disease
B. History of HD
C. Fitness and Healthy Eating
10:50 AM – 11:05 AM Break and Exhibit Viewing
11:05 AM – 11:55 AM Workshop Session Two
A. Everything you ever wanted to know about Genetic Testing
B. Social Security Disability Insurance
C. Living with a positive test result
12:00 Noon – 1:30 PM Lunch and Exhibit Viewing
1:30 PM - 2:20 PM Workshop Session Three
A. Talking to Kids About HD
B. How Changes in Cognition Impact Behavior
2:40 PM – 3:30 PM Comic Relief
3:30 PM – 3:45 PM Wrap Up and Evaluations
Event Preview
This is just some of the Information you will receive at this Annual Education Day [register for complete schedule!]
Everything you wanted to know about genetic test for HD
Dr. Myers’ has directed the genetic testing program at the Mass General since 1986. His presentation will focus on common questions that arise for people considering genetic testing for HD. These topics will include:
1. Prenatal testing through “Pre-implantation genetic testing”.
2. Genetic testing and clinical trials for people who do not yet have symptoms of HD.
3. What is the procedure for genetic testing and how much does it cost.
4. How are concerns about confidentiality handled.
5. Are there risks for insurance discrimination.
6.What is meant by an “intermediate repeat” and how common are these.
2. Genetic testing and clinical trials for people who do not yet have symptoms of HD.
3. What is the procedure for genetic testing and how much does it cost.
4. How are concerns about confidentiality handled.
5. Are there risks for insurance discrimination.
6.What is meant by an “intermediate repeat” and how common are these.
In addition, Dr. Myers has researched and published extensively on a very wide range of studies for HD, and he will leave time to address virtually any question that you might have.
Fitness and Healthy Eating At Any Stage of HD
Suzanne Imbriglio, RPT will explain the importance of staying fit through diet and exercise. For the past several years, professionals have advised people with HD to seek help when symptoms of the disease became apparent. For example, it wasn’t until a person had had several falls that they sought the services of a physical therapist. Certainly, this advice still holds. But, we now know that maintaining a level of fitness and eating the right foods helps the person with HD combat the symptoms of the disease (especially depression) in a much more efficient manner. This session will examine ways that people in every stage of the disease can stay active and fit. It will also provide the rationale for eating healthy and give examples of how to add nutritious calories to the daily diet.
Suzanne Imbriglio, RPT will explain the importance of staying fit through diet and exercise. For the past several years, professionals have advised people with HD to seek help when symptoms of the disease became apparent. For example, it wasn’t until a person had had several falls that they sought the services of a physical therapist. Certainly, this advice still holds. But, we now know that maintaining a level of fitness and eating the right foods helps the person with HD combat the symptoms of the disease (especially depression) in a much more efficient manner. This session will examine ways that people in every stage of the disease can stay active and fit. It will also provide the rationale for eating healthy and give examples of how to add nutritious calories to the daily diet.
Caring For A Child with Juvenile HD
New to our event this year we will have a workshop dedicated to parents who have children with Juvenile HD. This is a small group of families whose needs are often overlooked but, whose needs for education and support can be enormous. Kathy Knoblauch, LICSW , former Massachusetts Chapter Social Worker, will facilitate this workshop for the parents of children with Juvenile Huntington’s Disease. Families affected by Juvenile Huntington’s Disease will have the opportunity to learn from one another in this session. An overview of Juvenile HD will be presented, followed by open discussion facilitated by a clinical social worker. The format will be flexible to allow ample time for mutual problem solving and resource sharing.
Comic Relief
Living with HD brings a lot of stress to everyone in the family. Sometimes, the best therapy is laughter. This year we are offering attendees a chance to end the day with a laugh. The Danny Hustle show is a fast paced comedy magic experience. Danny has been performing magic for over 30 years and has entertained thousands of people from all over the world. Using simple props, comedy, and a larger than life persona, Danny has developed a family friendly show that is unique, fun, and exciting. In Danny's show anything is possible, anything can happen, and it usually does. But most importantly, everyone has fun!"
Living with HD brings a lot of stress to everyone in the family. Sometimes, the best therapy is laughter. This year we are offering attendees a chance to end the day with a laugh. The Danny Hustle show is a fast paced comedy magic experience. Danny has been performing magic for over 30 years and has entertained thousands of people from all over the world. Using simple props, comedy, and a larger than life persona, Danny has developed a family friendly show that is unique, fun, and exciting. In Danny's show anything is possible, anything can happen, and it usually does. But most importantly, everyone has fun!"
Speakers: [see newsletter for complete bio's]
Rosemary Best -BS in Special Education.
Jang-Ho Cha - MD PhD HD researcher
Dr. Samuel Frank - Huntington Study Group
Dr. Samuel Frank - Huntington Study Group
Virginia Goolkasian - licensed social worker, Regional Director for the New England Office of The HDSA
Bonnie L. Hennig, MSW,LCSW - licensed clinical social worker at the University of Connecticut Health Center Huntington’s Disease Program.
Danny Hustle - comic
Suzanne Imbriglio, RPT - Director of rehabilitation services at Lowell Health Care Center.
Suzanne Imbriglio, RPT - Director of rehabilitation services at Lowell Health Care Center.
Kathy Knoblauch, LICSW - social worker on the Huntington’s Disease Unit at Tewksbury Hospital
Richard Myers, PhD - Professor of Neurology at the Boston University School of Medicine and HD researcher
Stephen Richardson - Regional Public Affairs Specialist for the Social Security Administration (SSA) in New England.
Dr Vanessa Wheeler - Instructor in Neurology at Massachusetts General Hospital and Harvard Medical School and HD researcher.
Dr Vanessa Wheeler - Instructor in Neurology at Massachusetts General Hospital and Harvard Medical School and HD researcher.
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