HD Awareness

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  • Fecha de creación: August 2007
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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

    Amanda B de Amanda B
    NEWS

    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

    0 respuestas 52 semanas
  • Summer 2009 - Group Cycle Fundraiser!

    Xx-Ashlee-Xx de Xx-Ashlee-Xx
    Hi All,

    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
    1 respuesta 72 semanas
  • The Great Wall of China Trek in aid of HD!

    Xx-Ashlee-Xx 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.

    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
    0 respuestas 74 semanas

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Huntington's Disease by Sue Wright

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  • Stibbs
    Stibbs

    Hi 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
    x

    hace 3 semanas
  • HD Awareness
    HD Awareness

    Anybody that uses facebook please add me at ashleeduffy@msn.com and just type a comment that your from the bebo group - thanks xx

    hace 6 semanas
  • HD Awareness
    HD Awareness

    Hi 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 6 semanas
  • A-N-D-R-EW
    luv 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

    hace 9 semanas
  • Huntingtons-hd
    Huntingtons-hd

    Please join us :

    http://www.bebo.com/Huntingtons-hd

    M.A.D

    Making A Difference

    Ty

    hace 17 semanas
  • Simone
    luv Simone

    hey

    hace 23 semanas
  • Philip Floyd
    luv Philip Floyd

    Keep Safe All ... Heres Some Bebbbbooo Luv!

    hace 23 semanas
  • A-N-D-R-EW
    luv A-N-D-R-EW

    hiya just dropping off some luv for the group hope ur all well

    hace 23 semanas
  • A-N-D-R-EW
    A-N-D-R-EW

    hi how u all doing xxxxxxxxxxxxxx

    hace 24 semanas
  • Stibbs
    luv Stibbs

    Love to all
    xx

    hace 24 semanas
  • Fatal Exception
    luv Fatal Exception

    Some love for this group
    xx

    hace 28 semanas
  • Stibbs
    luv Stibbs

    Hail Hail !

    How you doing m8 ? .. easter was very different for me ... not had one like that b4 .. was ok :P

    Love to all
    7's

    hace 32 semanas
  • A-N-D-R-EW
    luv A-N-D-R-EW

    hi hope u all had a nice easter xxxxxx

    hace 32 semanas
  • Stibbs
    luv 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 32 semanas
  • A-N-D-R-EW
    luv A-N-D-R-EW

    hi hope u are all doing okay sorry ive no been in touch recently xxxxxxxxxxx

    hace 34 semanas
  • Stibbs
    luv Stibbs

    Love to this group
    x

    hace 34 semanas
  • Stibbs
    luv Stibbs

    love to all
    x

    hace 35 semanas
  • Huntingtons-hd
    luv 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.

    hace 35 semanas
  • Stibbs
    luv Stibbs

    Just to send some love to this group cause I like it :)

    Wishing you well
    Raymond
    x

    hace 36 semanas