http://www.jhdfamilies.co.uk/jhdforum This is an XML content feed of; JHD Forum : Last 10 Posts Sat, 31 Jul 2010 00:55:05 +0000 Wed, 28 Jul 2010 22:05:06 +0000 http://blogs.law.harvard.edu/tech/rss Web Wiz Forums 8.04 30 www.jhdfamilies.co.uk/jhdforum/RSS_topic_feed.asp http://www.jhdfamilies.co.uk/jhdforum/forum_images/web_wiz_forums.gif http://www.jhdfamilies.co.uk/jhdforum http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=82&PID=304#304 Author: Paula B
Subject: Young man with HD in prison in USA
Posted: 28 Jul 2010 at 10:05pm

www.in.gov/gov/2631.htm

Here's how to contact their senator.]]> Wed, 28 Jul 2010 22:05:06 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=82&PID=304#304 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=82&PID=303#303 Author: Paula B
Subject: Young man with HD in prison in USA
Posted: 28 Jul 2010 at 9:59pm


This is so sad.Some of us on the UK bored have posted emails to the senator

www.wishtv.com/dpp/mobile/Life-Sentence:-A-Rare-Case

Edited by Paula B - 28 Jul 2010 at 10:03pm]]> Wed, 28 Jul 2010 21:59:22 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=82&PID=303#303 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=80&PID=302#302 Author: Gordon
Subject: Book on JHD
Posted: 23 Jul 2010 at 4:22am

Hi Paula,hope that you are well.There are members of this site that have helped contribute to the writing of this book,it took a long time to piece it all together to make it right.Helen,Oliver and others from the EHDN done a good job!Take good care.Gordon]]> Fri, 23 Jul 2010 04:22:38 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=80&PID=302#302 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=81&PID=301#301 Author: Paula B
Subject: Disability reduction scheme for Council tax
Posted: 22 Jul 2010 at 10:57pm



We just applied for this.We didn't know we could get this until her lift was put in and the local council contacted us!!Just incase you guys didn't know either,but I'm sure you do!!Just scroll down to disability section.

   


http://www.carersuk.org/Information/Financialhelp/Helpwithcounciltax



Edited by Paula B - 22 Jul 2010 at 11:01pm]]> Thu, 22 Jul 2010 22:57:59 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=81&PID=301#301 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=80&PID=300#300 Author: Paula B
Subject: Book on JHD
Posted: 21 Jul 2010 at 11:09pm

Trish on the HDA bored posted this:


Book on JHD
Whilst browsing The Lancet I came across an interesting article on a book written specifically about JHD

The book is called ' Juvenile Huntington's Disease: and other trinucleotide repeat disorders '

I have taken the liberty of extracting the article in here. It is written by Fernando Cendes. The book is written by:

Quarrell Oliver WJ, Brewer Helen M, Squitieri Ferdinando, Barker Roger A, Nance Martha A, Landwehrmeyer G Bernhard
Oxford University Press, 2009
Pp 200. £49.95. ISBN-978-0-19-923612-1

Huntington's disease (HD) is one of the most common autosomal dominant disorders worldwide and one of the most devastating neurological diseases. The prevalence of HD is about 1 in 10 000 and it affects about 200 000 individuals in the Europe and about 100 000 in the USA.

The symptoms of HD can start at any age, but usually appear after the age of 40 years. The disease is called juvenile HD when it starts before the age of 20 years. HD with onset under 10 years of age is indeed quite rare, probably representing no more than 0·5% of all patients with HD. This disorder is even more distressing when it affects children, both because of the inherent effect on the parents' lives and because the early-onset form has more severe and rapidly progressive symptoms than the adult-onset form, and the disease might not be promptly recognised owing to lack of experience in most centres. In fact, HD in children is a completely different clinical disorder, which is mostly explained by larger expansions of trinucleotide CAG repeats (usually larger than 80 CAGs)—which was known clinically as “anticipation” long before the identification of the causative gene and the current understanding of the molecular mechanisms underlying CAG repeat disorders.

Overall, this book edited by Quarrell and colleagues is a concise yet comprehensive, updated, and well-referenced review of all the relevant aspects of juvenile HD, which are hard to find elsewhere. The editors did a great job in assembling this book.

The first two chapters provide an excellent description of the experiences of families whose lives “have been so irrevocably and relentlessly altered by juvenile HD”. These experiences are not easy matters to talk or think about; however, the text is useful in helping others understand what families go through with this distressing disorder.

The following chapters review the history of juvenile HD, discuss its pathology, biochemistry, and molecular mechanisms, and outline the role of mutation instability, animal models, clinical findings, and management of the disease. There is also a chapter about the clinical features of early and juvenile onset of other polyglutamine disorders, including autosomal dominant ataxias (eg, spinocerebellar ataxia) and dentatorubral-pallidoluysian atrophy. The book concludes with psychosocial factors and appendices with proposed scales for juvenile HD, which are adequately discussed and are very useful for researchers, clinicians, and health-care professionals.

As noted in the foreword of the book, “despite the number of people worldwide with HD, finding health-care professionals who understand the profound complexities of treating HD is extremely difficult”, and finding experts on the less common and more complicated form of juvenile HD “is impossible in many parts of the world”. For this reason, this book is important for health-care professionals who specialise in these neurological disorders. The text provides an excellent reference for all aspects of HD and the most common trinucleotide repeat disorders, and is recommended for neurologists, movement disorders specialists, paediatricians, geneticists, and students, as well as for caregivers of individuals with HD.

The book is quite expensive (available on Amazon from around £40) but there may be scope for the HDA and/or MB Members to buy and loan copies?
__________________]]> Wed, 21 Jul 2010 23:09:58 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=80&PID=300#300 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=79&PID=299#299 Author: Paula B
Subject: 20 active users on line 23.25pm today(20th July)
Posted: 20 Jul 2010 at 11:25pm

So many viewing but I talk to myself,why?

It would be great if you guests became members!!!   

Edited by Paula B - 22 Jul 2010 at 1:33pm]]> Tue, 20 Jul 2010 23:25:56 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=79&PID=299#299 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=75&PID=298#298 Author: Paula B
Subject: Rachel's Holiday pics on youtube
Posted: 18 Jul 2010 at 11:14pm

http://www.youtube.com/watch?v=igMBM2_Sh70

This is a video of the Canadian youtube girl group Illumcei.They have thousands of subscribers and thousands and thousands of channel views.They have added Rachel's video as one of their favourites on their channel!!!Good publicity to raise awareness!!This link will take you to their song but you need then to go top left and click on Illumcei in blue writing to get to their channel.


Oh and hubby is now very sore after climbing Snowdon!

Edited by Paula B - 19 Jul 2010 at 3:19pm]]> Sun, 18 Jul 2010 23:14:44 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=75&PID=298#298 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=78&PID=297#297 Author: Paula B
Subject: paula
Posted: 17 Jul 2010 at 10:09pm

Thankyou!!

Look forward to seeing you on there soon.There are a couple of ladies on there who have lost their kids to this horrible illness.They are lovely.They will be a big support to you to I'm sure xxxx]]> Sat, 17 Jul 2010 22:09:48 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=78&PID=297#297 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=78&PID=296#296 Author: deedie
Subject: paula
Posted: 17 Jul 2010 at 4:47pm

your daugter is a very beautiful girl and those are great pics of her

thankyou for that i will register on that other forum soon:)
]]> Sat, 17 Jul 2010 16:47:20 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=78&PID=296#296 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=78&PID=295#295 Author: Paula B
Subject: paula
Posted: 17 Jul 2010 at 3:02pm

Hello Deedie,nice to see back on here.The link for the HDA bored is on the front of this page.It will take you to the home page where you scroll down to message bored.Just follow the steps to register.
Of course you will miss her.I can imagine you always will.One day at a time.
You can see my daughter Rachel on a thread on here below this one.Pics of her holiday. xxxx]]> Sat, 17 Jul 2010 15:02:11 +0000 http://www.jhdfamilies.co.uk/jhdforum/forum_posts.asp?TID=78&PID=295#295