Below is copied in the attached Word 97 document for sharing.

HDSA's Juvenile Huntington's Disease Primer & Guide to Best Practices

June 2006

For the past five years, the American Legion Child Welfare Foundation has
supported HDSA's Juvenile HD program by funding publications and brochures that
educated and brought awareness to healthcare professionals about this little
known segment of the HD population. In past years, their grants have allowed
HDSA to develop and print the Juvenile HD Handbook, the Family Guide Series to
Juvenile Huntington's Disease, and the Juvenile HD section of The Marker
magazine. Through their assistance, families who have a child affected by this
disease began to realize that they were not alone and these tools could help
their child and healthcare professionals to diagnosis and treat the symptoms of
JHD more effectively.

In 2005, the American Legion Child Welfare Foundation approved a grant that
allowed HDSA to develop materials for school systems to use that explain
Juvenile HD. This three section project included case studies and "best
practices" that school administrators and teachers [as well as teacher aides,
classmates and parents] can use to educate those in elementary and junior high
schools about juvenile onset HD to ensure that the child affected by JHD has a
meaningful school experience.

The HDSA JHD Primer & Guide to Best Practices focuses on school and the JHD
child. HDSA was pleased to introduce these materials during the JHD workshop at
the HDSA National Convention in Milwaukee June 9-11th. Jane Mervar and I were
also very pleased to present the 2006 HDSA Juvenile Huntington's Disease Award
to Mr. Bill Pease and the American Legion Child Welfare Foundation during the
Saturday Evening Awards Dinner and Gala event on June 10th!

The Juvenile HD Primer is in a CD ROM format and is 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."

HDSA will distribute this educational material free of charge to any elementary
or middle school system, school administrator or parent who has a child affected
by Juvenile HD. HDSA will also provide the Family Guide pamphlet, "Juvenile HD"
as well as a copy of the "Juvenile HD Handbook" as companions to this
educational package. If you were unable to attend the HDSA national convention
or know a family who has children affected by Juvenile onset Huntington's
Disease, please have them contact:

HDSA - Anita Mark-Paul Email: amarkpau@...
212-242-1968 Extension 19 or 1-800-345-3272 Extension 19
Request: HDSA's JHD Primer and Guide to Best Practices resources

Please include this information in your HDSA Chapter or Center of Excellence
newsletter and/or share with JHD families at your next HD support group/chapter
meeting!

Thank you!

Jean Miller




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