Juvenile Huntington’s Disease!
2007 JHD Arizona Retreat
Since the number of those with JHD is so small, every single comment, concern, and corresponding need must be voiced in order for the quality of care to improve dramatically for you and your child with JHD! Come join with other families, who are also affected by JHD, in this casual non-threatening atmosphere, where you can share your fears, concerns, experiences, hopes and helpful strategies with others!
This year we are privileged to have Dr. Jane S. Paulsen, Ph.D., Professor of Psychiatry, Neurology and Psychology at the Carver College of Medicine at the University of Iowa and Helen Brewer, Juvenile Huntington’s Disease Care Advisor for the Huntington’s Disease Association in London, England in attendance. After visiting our retreat two years ago and listening to the tearful needs and concerns of 6 families living with JHD, Dr. Paulsen decided to form a collaborative group with clinicians and researchers from the European Huntington’s Disease Network. This new group will allow those interested in JHD to combine their efforts, expand mutual networking and raise awareness of the many unmet needs of families and children so that working together, the quality of life for everyone living with JHD can be improved.
This first ever American and European collaboration for JHD children and families has already resulted in two new exciting studies! The first study is called the “JHD Registry/Natural History Study” and will allow researchers to obtain data and vital information from JHD families that will in turn allow them to modify the existing rating scale. Currently, the same Unified Huntington’s Disease Rating Scale (UHDRS ’99) is being used for both those with HD and JHD. Creating a new rating scale for those with JHD only will allow researches to establish better baselines and monitor progression of the disease more accurately. Parents will also be asked to keep diaries of information such as medication and symptoms in order to help researchers compile information more quickly.
The second study to come out of this collaboration is the “JHD Qualitative Study.” Through the University of Iowa, Dr. Paulsen will be obtaining data from JHD parents on the impact JHD has had on them and will identify unmet needs of parents/guardians and other family members affected by JHD. The results concatenated in the US will then be compared with results already gathered in the UK to determine if needs identified are similar or not.
Come participate and meet other families dealing with JHD in the peaceful and casual setting of Prescott, Arizona, located in the cool pines just 1 ? hours north of Phoenix. This is the retreat’s 8th successful year.
Rooms are very comfortable and are like motel rooms with a double and since bed. Each room also has a private bath and balcony or porch with a beautiful view. If your child requires a special diet just let us know. There is no cost for parents and their JHD child, except your transportation to get here. However, the total cost of the retreat a very reasonable $100 for each person, which includes 2 nights and 7 meals so if you are able to pay any amount, please let me know so the money can be used to help other families!
If interested, please e-mail Phil Hardt immediately at email@example.com or, if you have questions, please call him at 602-309-3118. Formal registration forms will be mailed at a later date. This retreat is organized and conducted by the HDSA Arizona Affiliate.