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Two Special Topics!
1. HDSA's The Juvenile HD Primer - Guide To Best Practices is almost completed
2. 2006 HDSA Convention to hold "JHD Track" sessions for families of children with JHD
Am sharing some information I received from Deb Lovecky, HDSA, this morning for all families to be aware of for planning purposes. Hopefully all of you can find a way to get to the HDSA national convention in Milwaukee June 9-11th!
HDSA's The Juvenile HD Primer - Guide To Best Practices
As most families know, HDSA received a grant from the American Legion Child Welfare Foundation for "Education and the Child Affected by Juvenile Onset”. HDSA has been working hard to get this valuable resource finished. The Juvenile HD primer is being produced in a CD rom format and will be appropriate for teachers to use in the classroom to educate classmates, classroom aides, parents of classmates and themselves about the disease in order to provide the best quality of life for the child with JHD while they are able to attend school. At the same time, the child affected by juvenile onset HD can teach his/her classmates the important life lessons of tolerance and acceptance of those who may be “different.”
This Guide to Best Practices is targeted specifically to school administrators and will include novel ways that several school systems across the country have addressed the needs of their JHD pupils. The educational materials and tools will be distributed free of charge to any school system, administrator or parent who has a child affected by Juvenile HD in elementary or middle school. HDSA will also provide the Family Guide pamphlet, “Juvenile HD” [see below] as well as a copy of the “Juvenile HD Handbook” as companions to this educational package. This Guide to Best Practices and Juvenile HD Primer is in the final draft stages now and will be going to the review committee soon. Keep an eye out on HDSA website www.hdsa.org for an announcement on its availability!
2006 HDSA Convention to hold "JHD Track" sessions
HDSA really wants all families with a child with JHD know that they do appreciate their special needs and do want to give them information they can use. They are working on special sessions, "JHD Track" for families with a child with JHD and will have the final topics selected by the middle of next month. Of course parents need not attend the entire track; they can opt to attend workshops in other tracks as well.
Convention Registration
The HDSA convention will be held in Milwaukee
For those of you receiving this in HTML format, I'm attaching the HDSA Convention Registration form for you! Now you have no excuses not to register!
I'm excited to see HDSA offer these JHD resources for HD families!!
Jean
Resource: HDSA Family Guide Series - JHD
Note: this is not the JHD Handbook, but a special 4 page PDF document.
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