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Learning to live with Huntington's Disease

HD Book launch photosOur family book on learning to live with Huntington's Disease, with Sandy as lead author, has just been published by Jessica Kingsley Publishing and can be ordered on or

The book launch coincided with Sandy’s birthday, 8th May, at Shakespeare’s Globe, on the south bank of the Thames, with a great view over the Millennium Bridge and St. Paul’s.

We asked Richard Branson, because of his interest in stem cell research, to take a look at the manuscript for the book. He did so and then kindly gave it the following endorsement:

"This is a moving true story of how people can find the inner strength to rise above it when their world is turned upside down."

What a nice man. The book can be ordered now in the UK on and can be ordered in the US on . Each member of Sandy's immediate family has written a chapter from their perspective of what it's like to have your world turned upside down by finding out you are not a 'normal' family and that life will never be normal again.

BUT, it's not a tale of woe. The core story that came out of each person's chapter - knitted together by Sandy as overall editor and lead author - is how each of us can face up to catastrophic, life-changing information that may initially knock us over, but that people have an amazing ability to get back up, adjust (eventually) to the news and invent a new future for themselves to replace the one that has been lost.

We feel this book is of use to anyone who has had to adapt to and absorb a life-change that people outside see as impossible to cope with - showing that you can learn to not just cope with but rise above an ongoing 'catastrophe' like a terminal hereditary illness (or alcoholism or anorexia or other ongoing family traumas - we think our experience is applicable to families in other situations, too).