HD Awareness
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- Accesos al perfil: 1.970
- Fecha de creación: August 2007
- www.bebo.com/HDAwareness
- Información
- Huntington's Disease (HD) was first described in medical literature in 1872 by George Huntington, a physician. HD is a devastating brain disorder for which there is, at present, no effective treatment or cure.
HD slowly diminishes the affected individual's ability to walk, think, talk & reason. Eventually the person with HD becomes totally dependant upon loved ones for his or her care, which makes the number of lives touched by the disease even greater.
This Group is to create awareness as there are so many people out there that know nothing about HD. With a click of a mouse on Bebo they can learn so much more or learn of a new disease that they haven't even heard of, but so many people our fighting! For all those with HD in there family I hope to put useful info up & we can all offer support to 1 another.
Feel free to:
Add your pics 2 the photo stream!
Add a new topic 2 the forum!
Add a sign 2 our Whiteboard!
Leave a comment, ask any questions!
** !!CURE HD!! **
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christmas fete
de
Amanda B
NEWS0 respuestas 52 semanas
Fourth valley Support Group is having a Christmas Fete
CHRISTMAS FETE
29TH NOVEMBER 2008
IN THE
HERITAGE ROOM, MILTON ROW, DUNIPACE
FROM
12 NOON TIL 4PM
THE STALLS INCLUDE
SANTA'S GROTTO
TAMBOLA
SOUP & STOVIES
CAKE & CANDY
CHRISTMAS HAMPER
ETC
IN SUPPORT OF FOURTH VALLEY HUNTINGTONS GROUP
EVERYONE WELCOME
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Summer 2009 - Group Cycle Fundraiser!
de
Xx-Ashlee-Xx
Hi All,1 respuesta 72 semanas
Just wondering if anybody would be interested in joining us on a cycling event in aid of the Huntington's Disease Association. We decided on Hadrian's Wall ( http://www.cycle-routes.org/hadrians... ). The trip is 174 miles long and will be done over the course of 4 days. We plan to do the ride in the August bank holiday weekend (starting 29th Aug 2009)
There are over 20 people from all over the UK coming so far ranging from 19 years of age to 55 years of age. Anymore that want to join in would be great. Hoping to get a crowd of us so we can raise lots of money and awareness for HD. We will be wearing special HD T shirts on the ride which are in the planning process at the moment. Have sorted a couple of support vehicles too. You just need a bike and a few other bits I can let u know about if u wanna join us.
Still getting planned out but if you want to put your name down to join us then email me via bebo or reply to this topic. Also if you want anymore information, feel free to ask me.
Plenty of warning to get yourself training on a bike and for a very good cause. I haven't even got a bike yet but will be in the next couple of months!!! Eeekkkk!!
Should be a fab weekend and we will all be there to support one another.
Ashlee xx -
The Great Wall of China Trek in aid of HD!
de
Xx-Ashlee-Xx
I have volunteered to take part in The Great Wall of China Trek to raise money and awareness for Huntington's Disease. The trip offers a rare opportunity to trek and camp in a remote part of rural China and to experience local life in its most unspoilt state. Aside from the spectacular scenery of the Great Wall and the surrounding countryside, one of the most rewarding aspects of this trek is the ability to experience the warmth and enthusiasm of the Chinese people. In order to maximise the opportunities for interaction and learning about the local history and culture, a team of local translators supports the trek. The Great Wall attracts over a million visitors each year. However, the vast majority of tourists visit a small section of the wall near Beijing. We have planned a route that will take us beyond the regular tourist trail and onto sections of the wall that have only been seen by a handful of westerners over the last hundred years. The Great Wall of China is one of the world's most amazing feats of human endeavour. This colossal structure stretches more than 4,000 miles over the undulating terrain of northern China. The construction of the Wall involved tens of millions of people over a period of more than 2,000 years.0 respuestas 74 semanas
The following is an outline itinerary of my trip:
DAY 1 – SATURDAY 18 APRIL 2009
UK
BEIJING
We board our international flight to Beijing.
DAY 2 – SUNDAY 19 APRIL 2009
BEIJING – GUBEIKOU
We arrive in Beijing early in the morning (subject to flight confirmation) where we are met by our Expedition Leader. We board the buses for the transfer to Gubeikou and the starting point for our trek. Once we have settled into our rooms and had lunch, our Expedition Leader gives a full expedition briefing.
DAY 3 – MONDAY 20 APRIL 2009
GUBEIKOU – TAO CHUN
After a short transfer we start our trek with a 30-minute climb that takes us to the Wall. The first section hasn’t been restored and compared to other sections is very overgrown with bushes and trees. We then take a path down to a small reservoir with fantastic views of the Wall. After lunch we walk through a number of small rural villages to reach the first campsite in a valley called Tao Chun.
Trek 16km
DAY 4 – TUESDAY 21 APRIL 2009
TAO CHUN – SIMATAI
From the camp at Tao Chun we rejoin the Wall and continue along the Jinshanling section of it for the whole day until we reach the Simatai section. We then take a path off the wall and walk towards the Simatai camp over the hillside. This section of the Wall has been wonderfully restored in parts, but will still involve a bit of scrambling to get up some of the higher steps in certain sections, and there are plenty of ups and downs. This is a strenuous but very rewarding day with magnificent views of the Wall.
Trek 18km
DAY 5 – WEDNESDAY 22 APRIL 2009
SIMATAI – GANFANG
We leave our campsite in Simatai and retrace our footsteps from the previous day back up to the wall. We reach a suspension bridge and cross over this before beginning a steep section of path which takes us up to the 12th Tower – this serves as our lunch spot. On a clear day, the views back across the mountains are spectacular. After lunch we drop down from the wall into the woods, eventually emerging into a valley where we follow the stepped crop system down into the village of Gangfang. This is the hardest day on the trek but we are rewarded with fantastic views. We set up camp in the grounds of the local school.
Trek 14km
DAY 6 – THURSDAY 23 APRIL 2009
GANFANG – LINGXIU
After leaving the village we make our way along dirt tracks and through small villages until we reach the Wall at the Bailing Arch - a great viewpoint and an excellent place for lunch and a well deserved rest. Once through the Wall we descend into a valley, passing through a number of villages. The last part of the walk is on a road which takes us to a hotel nestling on the edge of a r
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Very useful website!
0 comentarios 507 días
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** Interesting Science News! **
Check out the following links to read of the most recent research. Some very interesting information.
http://www.sciencedaily.com/releases...
http://www.sciencedaily.com/releases...
http://www.sciencedaily.com/releases...
http://hddrugworks.org/index.php?opt...
^^ Sounds promising ^^
http://www.hdlighthouse.org/showUpda...
http://www.hdsa.org/research/news/81...
http://www.hdlighthouse.org/showUpda...0 comentarios 507 días
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** !!New Research Articles!! **
I recieved the following in an email and thought I'd pass it on.
The HD Lighthouse has been busy uploading the following new editorials based on recent research studies published in HD! Checkout the HD Lighthouse www.hdlighthouse.org to read them all.
Boosting BDNF by Listening to Music
This interesting study shows that being exposed to music increases BDNF in mice. This is of interest to HD patients since the Huntington's Disease gene is known to result in a decrease in BDNF and numerous studies suggest that this reduction is a major pathology of the disease.
BDNF, fragile X syndrome, and memory
Gene therapy to boost BDNF is a possibility and so is drug treatment. In the meantime, many of those at risk and those who are symptomatic are pursuing a proactive strategy to boost BDNF through exercise. Another known ways are listening to music and the use of SSRI antidepressants.
CHDI and Intellect Neurosciences to collaborate on testing Oxigon for HD
Some antioxidants can break down and become oxidants but antioxidants in the indole family do not. Oxidative damage is a known pathology in Huntington's Disease. Oxigon is a promising addition to the research pipeline.
Young People in HD Families
Here's another welcome article based on asking HD family members about their experiences, in this case 33 young people from ages 9 through 28 in Scotland. Young people who coped well were those with the most support, good relationships with others, and an early knowledge of HD0 comentarios 769 días
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- I don't regret it at all
- I do regret it
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How did you come across this HD Awareness Bebo Site? (just curious!)
- Your a friend of mine and see it on MY profile (or I personally told you)
- You heard about it through the message I left on the HDA Message Board
- Your friend or a family member had joined so you seen it on THIER profile
- You were randomly surfing Bebo and came across it
- Other - please leave a comment and state how, thanks
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What Do You All Think Of The Skin??
- Like the new one
- Prefer the old one
- Don't mind, both cool
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Stibbshace 3 semanasHi there i stopped by and thought I'd say hello
Not been on bebo for a while how do you play it again haha jokin
Take Care
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HD Awarenesshace 6 semanasAnybody that uses facebook please add me at ashleeduffy@msn.com and just type a comment that your from the bebo group - thanks xx
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HD Awarenesshace 6 semanasHi Guys, not been very active recently but I am back
Would anyone under the age of 35 be interested in volunteering to help out the Huntington's Disease Youth Association which will be a group for young adults in HD Families. Please send me a email message via bebo or at ashleeduffy@msn.com if you are interested. Or if you would just like to become a member please email me and I will give you the info you need so you can stay up-to-date with what is going on and the exciting things we have planned for the HDYA which is run by the proper Huntington's Disease Association and the professionals that there.
Hope all is well xx -
hace 9 semanas
A-N-D-R-EW
theres a programme on with a hd story this friday its called without a trace its on at 11pm on hallmark channel
hope ur all doing well -
Huntingtons-hdhace 17 semanasPlease join us :
http://www.bebo.com/Huntingtons-hd
M.A.D
Making A Difference
Ty -
hace 23 semanas
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hace 23 semanas
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hace 23 semanas
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A-N-D-R-EWhace 24 semanashi how u all doing xxxxxxxxxxxxxx
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hace 24 semanas
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hace 28 semanas
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hace 32 semanas
Stibbs
Hail Hail !
How you doing m8 ? .. easter was very different for me ... not had one like that b4 .. was ok
Love to all
7's -
hace 32 semanas
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hace 32 semanas
Stibbs
Hi Sarah,
Best advice I can give you would be to go here
www.thehdsc.org
Join the moderators in any or all of the
three scheduled Club Chats each week on:
Mondays at 3-5 pm Eastern
8-10 pm UK time
Wednesdays at 1-3 pm Eastern
6-8 pm UK time
Fridays at 5-7 pm Eastern
10pm-midnight UK time
These are eastern and UK times I do not know offhand what that would be for your area .. I can try work it out if you would like ?
Everyone is welcome!
You are not alone!
Love to this group ... wishing you
Happy Easter
xx -
hace 34 semanas
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hace 34 semanas
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hace 35 semanas
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hace 35 semanas
Huntingtons-hd
hi all we are another page on bebo about hd not trying to take over this one but we are trying to raise awareness and would like to say a huge thanks to all that care and much love from me / mark please visit the hd site and read about hd and what causes it if you are not sure what hd does and how it stars or what starts it click this link http://www.hda.org.uk/index.html to see the website if you cant click it copy and paste it into the url bar at the top of your browser thanks again and have some love.
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hace 36 semanas




























happy christmas and happy new year from me everyonexxxxxx
A-N-D-R-EW 0 respuestas