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suetwin2
Joined: February 26, 2007
Last Sign In: 1 month ago
Videos Watched: 340
Subscribers: 14
Channel Views: 1,587
I am the owner of The Huntington's Disease Support Club (www.thehdsc.org) and devote my life to providing online support, and creating awareness and raising funds for this devastating disease.

I am also web mistress to "The Runaways" whose bass guitarist Kevin's wife has Huntington's Disease.
Name: Sue
Country: United Kingdom
Website: http://www.thehdsc.org
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Recent Activity  
suetwin2 became friends with nutleyfan6294 (1 week ago)
 
 
suetwin2 became friends with curlii89 (2 months ago)
 
 
suetwin2 became friends with leetwin1 (3 months ago)
 
 
suetwin2 became friends with joshuaace (3 months ago)
 
 
suetwin2 became friends with HDPatientOutreach (5 months ago)
 
CBS Special on Huntington's Disease/Chris Furbee
7:55
CBS Special on Huntington's Disease/Chris Furbee
2 years ago 67,846 views toomuchyonke
Huntington's Dance (C/o Chris Furbee)
5:24
http://www.huntingtonsdance.org/projects.html Our current project is a document...
2 years ago 28,556 views toomuchyonke
Huntingtons Disease Helping Hands
6:25
People with Huntingtons Disease
3 years ago 41,518 views elric428
Heather Stice, Heavenly Dancer
4:14
Heather Elizabeth Ashley Stice had Huntington's Disease and passed away on Ash Wed...
2 years ago 7,070 views jtkadmin
Grandfather Tribute
8:00
[TRANSLATED] Grandfather Tribute
[TRANSLATED] Grandfather Tribute
Tribute to my grandfather who is dying from HD
2 years ago 1,699 views jlholder
Mum & Dad Dance Another Dance
1:00
My dad has Huntington's Disease and has been in a wheelchair for years but today h...
2 years ago 8,821 views anjipowerr
Danny DeVito Introduces 50/50
2:02
From www.cstar.com and Jersey Docs, Danny introduces 50/50, from filmmakers Ted Bo...
2 years ago 20,248 views ClickStarInc
Huntington's Disease by Sue Wright
4:26
An introduction to the basics of Huntington's Disease designed to create awareness...
2 years ago 32,159 views suetwin2
A message from Mom Huntington's disease
6:04
Mom wanted to tell all 10 of us kids what is going on with her right now herself. ...
2 years ago 13,041 views jlaminar
Channel Comments (13)
suetwin2 (2 months ago)
Hi LiverOmar!

I'd suggest you look at : HOPES at http://www.stanford.edu/group/hopes/ and The HD Lighthouse at http://www.hdlighthouse.org/

One video you might wish to watch despite it being long is Decision Making in the Genomic Era at http://www.youtube.com/watch?v=vlFXblyePRA

I hope those suggestions will help.
LiverOmar (2 months ago)
hey sue, I really appreciate the work you're doing for the cause.
can you please give me a site or a video speaking about the disease from a genetic point of view cause I'm making a poster for students want to be doctors
Thanks in advance.
suetwin2 (3 months ago)
Hi Gina & Andrea! Sorry for the delay getting back to you but I've not been online much recently. I'm well, thanks. I moved house in December so am busy getting the new place sorted out. Matt is well too and will be running the London Marathon next month - his first! I hope you are well and can get your accounts sorted out. Someone hijacked my Yahoo Messenger recently and has been sending out IMs under my name.... grrrrr. Take care and God bless
EvAnEsNcELuVr (3 months ago)
hey sue. remember us? gina and andrea! well gina kinda forgot her password so shes tryinng to get that back. this is gina on andrea's youtube account. how are you? i haven't talk with you in a long time. how is matt and how is everything?
ashleyfan111 (1 year ago)
My Mom has for This diease she is gettin worser now she wont even come down stairs i am 15 i really wants some help my dad is always buzy with her i just want to talk to my mom but she dont understand i want to know if i have got it i think i might but there is no way i will every know please could you help me. God bless!
BrownEyedbballer18 (1 year ago)
hey sue! i made a video on Huntington's Disease and I plan to make more videos.

If you don't mind watching it, that would be great :)
well, talk to you later

<3 Gina
EvAnEsNcELuVr (1 year ago)
Thanks Sue for adding me as a friend! God Bless You
EvAnEsNcELuVr (1 year ago)
Hey Sue! I'm  Gina's sister. I just wanted to tell you that now im kinda interested in studing HD because Gina was just studing about it.And I just wanted to know if you could be my friend. By the way my name is Andrea. God Bless You.
suetwin2 (1 year ago)
Hi Gina! Only just saw your comment so probably too late to answer - sorry!

Huntington's Disease places a huge burden on any population since, although a rare disease, it impacts the whole family not just the sufferer. Many sufferers have depression and just as many, if not more, caregivers suffer depression too. As the disease progresses, sufferers need greater and greater support until they require 24/7 care for all their needs. Caregivers who attempt to provide this are prone to burn themselves out and, of course, can no longer work either. The impact on each family is huge - physically, emotionally, and financially.

Huntington's can indeed be targeted for gene therapy and researchers are currently working on being able to silence the mutated gene. I believe this will be the eventual cure.

I hope those answers help a little and aren't too late!

Love and hugs,
Sue
BrownEyedbballer18 (1 year ago)
SUE! I HAVE SOME QUESTIONS:

IF YOU GET THE CHANCE ANSWER THEM! PLZZ

ok so here we go:


How has huntingtons disease impacted our population?
Can it be targeted for gene threapy?
What the gene threapy is

please sue
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