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I'm sharing this request on behalf of Helen Brewer, Care Adviser - Juvenile Huntington's Disease for Euro-HD.
Any parent of children with JHD, young people with JHD, siblings etc. who want to contribute a story is welcomed to! If you would like to help all JHD families, please contact Helen or Marie McGill [see below] by January 26th. This doesn't mean your input needs to be completed by this date, just to let them know you are interested in participating by writing something to be included. Attached is the flyer, also copied below.
Love
Jean
Juvenile Huntington’s Disease Book
(We need your help to write a book)
Juvenile Huntington’s Disease Book
(We need your help to write a book)
PLEASE GET IN TOUCH BY 26TH JANUARY 2007 if you are interested in participating (deadline for completion of all work is the 25th May 2007).
Background information
Members of the Juvenile Huntington’s Disease (JHD) working group of the European Huntington’s Disease Network (EHDN) are creating a book about JHD (published by Oxford University Press). If you would like more information about the European Huntington’s Disease Network, the JHD group and its members please visit www.euro-hd.net
Members of the Juvenile Huntington’s Disease (JHD) working group of the European Huntington’s Disease Network (EHDN) are creating a book about JHD (published by Oxford University Press). If you would like more information about the European Huntington’s Disease Network, the JHD group and its members please visit www.euro-hd.net
Will this book be helpful to me?
The book will be helpful to anyone interested in JHD, whether you are a FAMILY MEMBER, scientist or professional. The aim of writing this book is to provide a valuable resource for all of these different groups and will help to raise understanding and awareness of the condition.
The book will be helpful to anyone interested in JHD, whether you are a FAMILY MEMBER, scientist or professional. The aim of writing this book is to provide a valuable resource for all of these different groups and will help to raise understanding and awareness of the condition.
Why is this book needed?
Families tell us they are better able to cope when they share from each others experiences. The professionals who support you need to have a much better sense of what it’s really like to live with JHD. It is also essential if we are to understand the disease better and help improve quality of life to have access to reliable, up to date information.
Families tell us they are better able to cope when they share from each others experiences. The professionals who support you need to have a much better sense of what it’s really like to live with JHD. It is also essential if we are to understand the disease better and help improve quality of life to have access to reliable, up to date information.
How can I help?
We are looking for family members who would be happy to share their story and experiences of JHD. This is a really important part of the book and we cannot do this without your input. If you contact us (see details below) we will offer any support you need to write about your family’s experience of living with JHD.
We are looking for family members who would be happy to share their story and experiences of JHD. This is a really important part of the book and we cannot do this without your input. If you contact us (see details below) we will offer any support you need to write about your family’s experience of living with JHD.
My brother/sister has JHD, can I help?
All members of your family can help (including parents, other family carers, and any other brothers and sisters).
All members of your family can help (including parents, other family carers, and any other brothers and sisters).
I have JHD can I help?
You know better than anyone else how JHD has affected your life. You may wish to write something or it may be easier for you if you tell your story by video. Whatever you choose to do, your help will be invaluable to all of us.
You know better than anyone else how JHD has affected your life. You may wish to write something or it may be easier for you if you tell your story by video. Whatever you choose to do, your help will be invaluable to all of us.
These pieces will be put together in a chapter by Helen Brewer (Huntington’s Disease Association) and Marie McGill (Scottish Huntington’s Association). Your contribution can be anonymous if you prefer.
If you are interested in doing this, or would just like to know more about the project, then please get in touch with the most appropriate contact:
If you live in ENGLAND, WALES OR ANY OTHER EUROPEAN OR INTERNATIONAL LOCATION [USA]
Contact Helen Brewer
By email helenbrewerhda@...
By telephone T 0207 022 1950.
or write to her at
Huntington’s Disease Association
Downstream Building
1 London Bridge
London
SE1 9BG.
Contact Helen Brewer
By email helenbrewerhda@...
By telephone T 0207 022 1950.
or write to her at
Huntington’s Disease Association
Downstream Building
1 London Bridge
London
SE1 9BG.
If you live in SCOTLAND, NORTHERN IRELAND or SOUTHERN IRELAND
Contact Marie McGill
By email mariemac2000@...
By telephone M 07932 628604
T 01505 322245
or write to her at
Scottish Huntington’s Association
Thistle House
61 Main Road
Elderslie
SCOTLAND
PA5 9BA
Contact Marie McGill
By email mariemac2000@...
By telephone M 07932 628604
T 01505 322245
or write to her at
Scottish Huntington’s Association
Thistle House
61 Main Road
Elderslie
SCOTLAND
PA5 9BA
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