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Research, drugs, treatment, new diagnosis Forum for medical issues, and for the recently diagnosed (and families)

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Old 17-02-16, 09:38 PM   #1
Allan
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Default THE WAY FORWARD - Research all about it!

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This is more like it ......

17th February, 2016 - Major Wellcome Trust award to UCL boosts Huntington’s disease research

Major Wellcome Trust award to UCL boosts Huntington’s disease research

A much broader, hopefully, creative approach.


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Old 18-02-16, 10:00 AM   #2
Joseharry
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Default Re: THE WAY FORWARD - Research all about it!

Good Morning Allan,
Hidden in the article is info re volunteers for Lumbar Puncture.
Wonder if you could pick it out and put it on the board please.
I went for my screening visit on Tuesday and am booked in to have the LP next Wednesday.
They will ,if necessary, provide overnight hospital accommodation, pay all travel expenses, and even pay you for your time based on how far you have to travel.....I "earned" £20 for Tuesdays visit!
At the screening visit I was given a general medical check up, and a thorough neuro exam as well as having bloods taken.
Not looking forward to the LP but know its not painful, just a bit uncomfortable and hopefully will help find a way to deliver an effective treatment for HD.

Thank you,
Brenda
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Old 18-02-16, 10:27 AM   #3
Gabby
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Default Re: THE WAY FORWARD - Research all about it!

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Originally Posted by Joseharry View Post
Good Morning Allan,
Hidden in the article is info re volunteers for Lumbar Puncture.
Wonder if you could pick it out and put it on the board please.
I went for my screening visit on Tuesday and am booked in to have the LP next Wednesday.
They will ,if necessary, provide overnight hospital accommodation, pay all travel expenses, and even pay you for your time based on how far you have to travel.....I "earned" £20 for Tuesdays visit!
At the screening visit I was given a general medical check up, and a thorough neuro exam as well as having bloods taken.
Not looking forward to the LP but know its not painful, just a bit uncomfortable and hopefully will help find a way to deliver an effective treatment for HD.

Thank you,
Brenda
Well done & Thank you Brenda.
Also thank you for the information very interesting and useful my hubbie is waiting to go for the LP Lauren Byrne clinical nurse has been in contact but as he comes under a different hospital and consultant the hold up is the sharing of his notes / information .

take care
Gabby
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Old 18-02-16, 12:46 PM   #4
Allan
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Default Re: THE WAY FORWARD - Research all about it!

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Hi Brenda

Apologies for missing that. I was so excited at seeing the notification of collaborative team work in HD research at UCL. Also, that Gillian Bates* is to become Co-Leader of the UCL Queen Square team alongside Sarah Tabrizi.

Here is the important link to the CSF study: HD-CSF: Studying cerebrospinal fluid to understand key CNS patho-biological targets in Huntington’s disease

…… and the Volunteers for Lumbar Puncture: HD-CSF: Information and Consent Form

Are you having an MRI scan or do all your hidden tattoos prevent that? It says: “Some things can create a health risk or interfere with imaging, such as medical implants, some permanent cosmetics or tattoos.”

…… and 20 quid’s good for something at the weekend - or your new found hobby.

*Gillian Bates: The molecular genetics of Huntington disease — a history

Best wishes

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Old 19-02-16, 09:00 AM   #5
Joseharry
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Default Re: THE WAY FORWARD - Research all about it!

Hi Allan,
Wish I did have some tattoos......may have saved me some blushes during the window cleaner episode!

Yes, I have signed up for the MRI too.
Never had one before but think I will be ok, I used to work in the Imaging Department at St Thomas' Hospital which included X Ray, CT and MRI so I am at least familiar with the procedures, equipment etc. Having said all that I may end up a quivering wreck!

Gabby, we met with Lauren Byrne....she is lovely....very approachable, kind and patient.


Brenda
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Old 19-02-16, 09:31 AM   #6
toosh
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Default Re: THE WAY FORWARD - Research all about it!

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Originally Posted by Allan View Post
Hi Allan
Interesting stuff.
Will EnrolHD be linked into this?
It was one of the sub-headings doen the lefthand side of the article but doesn't feature within the main body.
Just thinking of LB volunteers. Would have thought there would be a few on EnrolHD
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Old 19-02-16, 09:32 AM   #7
toosh
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Default Re: THE WAY FORWARD - Research all about it!

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Originally Posted by toosh View Post
Hi Allan
Interesting stuff.
Will EnrolHD be linked into this?
It was one of the sub-headings doen the lefthand side of the article but doesn't feature within the main body.
Just thinking of LB volunteers. Would have thought there would be a few on EnrolHD
LP (lumbar puncture)
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Old 19-02-16, 01:00 PM   #8
Gabby
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Default Re: THE WAY FORWARD - Research all about it!

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Originally Posted by toosh View Post
Hi Allan
Interesting stuff.
Will EnrolHD be linked into this?
It was one of the sub-headings doen the lefthand side of the article but doesn't feature within the main body.
Just thinking of LB volunteers. Would have thought there would be a few on EnrolHD
I believe its all linked to enroll HD . At each neurologist appointment the same tests are done and recorded for enroll hd this is the information needed to be shared with the UCl team for Hubbie to be on the Lumbar puncture trail xxx

Gabby
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Old 19-02-16, 01:01 PM   #9
Gabby
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Default Re: THE WAY FORWARD - Research all about it!

Quote:
Originally Posted by Joseharry View Post
Hi Allan,
Wish I did have some tattoos......may have saved me some blushes during the window cleaner episode!

Yes, I have signed up for the MRI too.
Never had one before but think I will be ok, I used to work in the Imaging Department at St Thomas' Hospital which included X Ray, CT and MRI so I am at least familiar with the procedures, equipment etc. Having said all that I may end up a quivering wreck!

Gabby, we met with Lauren Byrne....she is lovely....very approachable, kind and patient.


Brenda
thank you Brenda x
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Old 22-02-16, 12:35 PM   #10
Allan
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Default ONE WAY FORWARD - Research all about it!

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This year’s CHDI sponsored Huntington's Disease Therapeutics Conference: A Forum for Drug Discovery & Development is taking place this week at Palm Springs, California, USA

Venue: Parker Hotel
Formerly Gene Autry's Melody Ranch and Merv Griffin's Givenchy Resort and Spa, The Parker Hotel is situated on thirteen acres of landscaped gardens surrounded by the desert and mountains.

The conference programme covers all aspects of drug discovery related to Huntington's disease. Sessions include:
  • Huntingtin: Structural Insights Leading to Therapeutic Approaches
  • Dynamic Changes in RNA and DNA Handling at the Huntingtin Locus and Throughout the Genome
  • Targeted Therapies for Huntingtin Lowering
  • Replacing Cells - Restoring Networks
  • Clinical Measurements and Modelling
The complete programme can be seen here: Conference programme

What the CHDI does.

A little frog tells me that the lab rats and mice are to hold a squeaky but rowdy placard wielding demonstration on the hotel lawn on Tuesday.

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