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Old 19-08-14, 12:05 AM   #21
Allan
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Default Re: Mishmash ......

You wonder when he might get time to do his day job with all this other stuff:

2014
June 20-22
Huntington’s Disease Society of America Annual Convention
Louisville, Kentucky.
September 19-21
European Huntington’s Disease Network Plenary Meeting
Barcelona, Spain.
October 4-5
Huntington’s Disease Association Annual Conference
Telford, UK.
October 22-25
Huntington Society of Canada Annual Conference
Winnipeg, Canada.

I’d rather listen to Sean Lock or Lee Mack if I wanted a bit of on-stage humour.

I wonder how much time per annum the Medical Advisory Panel give to the HDA and whether they receive payment for their advice?

I’m trying to figure out where the fund raising millions are used:

• Salaries
• Stationery/HDA Leaflets/HDA Newsletter
• HD Buzz
• Medical Research

I suppose that all comes out at the AGM ........
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Old 19-08-14, 06:35 AM   #22
dennisw
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Default Re: Mishmash ......

Hi Allan,
I have just received the HDA 2013/14 Annual Report and Summary Accounts.
The HDA is classed as one of larger small charities, so in financial terms are fairly small beer.
For 2013/14 total funds raised were £1,393,939 and expenditure £1,390,300. The RCA service accounts for 68% of this and Governance 1%. Research 3%. If you do not receive a copy contact Karen on the Liverpool number and I am sure you could get one.
The primary aim is to provide support to people affected by HD which his why RCA service takes largest slice of the cake.
Cath Stanley says in her report "one of our keys aims for the forth coming year is to raise awareness of the complex mental health and cognitive symptoms that some people display," which from many of the posts on here can only be a good thing.
Dennis
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Old 19-08-14, 07:20 AM   #23
Joseharry
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Default Re: Mishmash ......

Hi Dennis,

If all this money is going to support the families / sufferers affected by HD then why oh why is nobody helping the likes of CC through her crisis? This is surely an example of HD at its most terrifying worst and she appears to be left floundering.
My other big issue with the HDA is the lack of good information for people wanting to produce HD free babies.
To my mind this should be a priority above all else in an effort to contain the spread of this vile disease.
Im all for research and want a cure as much as anybody else but we are living in the here and now and have it in our power to stop its spread to a major degree . The science is out there but seldom spoken about.
Surely the HDA should be shouting this information from the rooftops not burying it .
I am feeling a little disillusioned with the HDA.
Rant over!
Brenda
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Old 19-08-14, 06:46 PM   #24
Allan
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Default Re: Mishmash ......

Quote:
Originally Posted by dennisw View Post
I have just received the HDA 2013/14 Annual Report and Summary Accounts.Dennis
Hi Dennis

Thanks for that.

Cor blimey! £3,639 left in the bank – that’s a bit tight isn’t it?

Do the Annual Report and Summary Accounts eventually appear on the website? This would be a much cheaper way of sending them out to everyone rather than by post.

Membership currently stands at 3,718. If we all requested a copy through the post then we’d be in the red.

C’mon Nicola, we need all the cream pies you can get. Have you approached the major Rugby teams in Wales? They all like publicity that’s positive and community-related. Refer to this thread, Pie in the face for hd: http://hdmessageboard.com/showthread.php?t=4368

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Old 19-08-14, 08:05 PM   #25
dennisw
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Default Re: Mishmash ......

Hi Allan,
I will enquire about the report going onto web site.
Twice a year Newsletter does, so technology is there.
Yes, it is a tight budget, a number of years back they had to raid the reserves to keep going. Since then the RCA a Service has changed the way they work, less hours, more phone, less travel. Extra effort fund raising and now HDA aimed for and achieved having 6 months operating cost in the reserve.
In the same period some similar sized charities have had to almost close limiting their support to a notional telephone help line.
The RCA cover is slowly growing, and new support groups popping up.
HDA even nominated for national award for financial management.
Dennis
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Old 20-08-14, 12:14 PM   #26
william
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Default Re: Mishmash ......

Hi all

I have sought advice from the administrator about the issues raised regarding a closed group and spiders etc. Here is the response............

"We could make it a closed group fairly easily technically, people would then have to sign up giving an email address and a nickname in order to see the threads - in addition all posts would vanish from search.

However making it closed would stop people finding threads when searching the website or google and stop people reading 'anonymously' (without signing up for an account) so it has disadvantages as well as advantages. Quite a lot of people find the message board when using Google to search for support for specific topics about HD and they would be unable to do that in future. Someone who wanted to cause problems could still sign up with a free email address and harass or monitor users that way. So it's a trade off between making information available for people who don't feel like signing up yet and having it publicly visible."

We would be happy to look into this further and compile your comments and thoughts to take these options further. On reading the posts, there are a couple of people who are for and against some suggestions so we have to consider all viewpoints.

Thanks

Bill
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Old 20-08-14, 01:25 PM   #27
Allan
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Default Re: Mishmash ......

Hi Bill

I am only speaking for myself as a computer user since 1966 and an internet researcher since well before Google made its incisive move into browser and searching territory.

Sir Timothy John "Tim" Berners-Lee, OM, KBE, FRS, FREng, FRSA, DFBCS, also known as "TimBL", made a proposal for an information management system in 1989, and he effected the first successful communication via the Internet sometime around the end of that year.

"I just had to take the idea and connect it to the Transmission Control Protocol and domain name system ideas and …… ta-da! …… the World Wide Web: an Internet that was not simply a way to send files from one place to another but was itself a “web” of information that anyone on the Internet could retrieve."

In 1993, it was announced that the World Wide Web technology would be available for anyone to use on a royalty-free basis. Since that time, the Web has changed the world, arguably becoming the most powerful communication medium the world has ever known. The WWW has fundamentally altered the way we teach and learn, buy and sell, inform and are informed, agree and disagree, share and collaborate, meet and love, and tackle problems ranging from putting food on our tables - to research and hope for curing diseases.

In 2007, TimBL once again confirmed his commitment to ensuring an open, free Web accessible and meaningful to all where people can share knowledge, access services, conduct commerce, participate in good governance and communicate in creative ways.

I agree with him.

We must keep the HDA Message Board OPEN. It is "everything" to those who use it intermittently or on a daily basis: It's a safe haven; it's a lifeline, it's a punchbag; it's a friend's meeting place; and above all it's the greatest source of unique information and fine detail of a disease with which we are all living - as Carers and especially as brave people with hd.

Take it easy out there, relax and think about what a wonderful "resource" we have here ........
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Old 20-08-14, 10:24 PM   #28
Cupcake
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Default Re: Mishmash ......

Hi Allan

We must keep the HDA Message Board OPEN. It is "everything" to those who use it intermittently or on a daily basis: It's a safe haven; it's a lifeline, it's a punchbag; it's a friend's meeting place; and above all it's the greatest source of unique information and fine detail of a disease with which we are all living - as Carers and especially as brave people with hd.

Take it easy out there, relax and think about what a wonderful "resource" we have here ........

I agree with you there, could not have written it better myself. As I said before, we can be anonymously and we have to think about what we put in our messages, if we do t want to share it publically, we can private message the people we want to share with.

Take care xxxx
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Old 21-08-14, 04:26 PM   #29
angecornwall
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Default Re: Mishmash ......

please keep this Messaage Board open..... end of xxxxxxxxxxx
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Old 21-08-14, 07:45 PM   #30
toosh
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Default Re: Mishmash ......

Quote:
Originally Posted by Allan View Post
Hi Dennis

Thanks for that.

Cor blimey! £3,639 left in the bank – that’s a bit tight isn’t it?

Do the Annual Report and Summary Accounts eventually appear on the website? This would be a much cheaper way of sending them out to everyone rather than by post.

Membership currently stands at 3,718. If we all requested a copy through the post then we’d be in the red.

C’mon Nicola, we need all the cream pies you can get. Have you approached the major Rugby teams in Wales? They all like publicity that’s positive and community-related. Refer to this thread, Pie in the face for hd: http://hdmessageboard.com/showthread.php?t=4368

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Do you think we could challenge Shane Ritchie and Tony Hadley?
Toosh
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