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Fundraising, events, summer camps, support groups Tell us about your UK fundraising activities and local meetings

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Old 10-05-15, 01:56 PM   #1
Trish
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Default 2015 HD Awareness Week (11 - 17 May)

Hi everyone

Thought I’d pop in today to see what’s occurring for HD Awareness Week next week.

http://hda.org.uk/news?tag=awareness-week

It’s a shame there is nothing more listed than ‘Cake That to HD’ on the main HDA Home page features but I am sure there must be some out there doing stuff that they want to advertise on here?

For my own part, I have dabbled on YouTube again and knocked up the following which I will be putting out on FaceBook and Twitter from tomorrow (Monday 11th).

https://www.youtube.com/watch?v=A9baiji5hmQ

If you take a look you will see there are adapted photos of Ruby & Ruby-Tuesday for each day of the week, so I will post up a photo a day accordingly and also the video link in a separate post(s) so that it’s a double swipe as it were each day.

You will also spot the reference to Steve’s birthday on Thursday. I will be posting up a link to my latest blog on that day as I always do to remember Steve. It will be called The fairness of Awareness. I drafted it a little while back and am pleased to se from looking at some of the latest posts on Messy Board I have captured some of the stuff mentioned of late (Lisa Genova’s book and films about HD etc among other stuff.)

Please don’t post up any links on FB or Twitter until tomorrow at the earliest to make a bigger impact on Day 1 but I would be really grateful if people could ‘share’ and/or ‘RT’ posts on Twitter if you have FB pages or Twitter accounts from tomorrow.

My own Twitter account is @TDainton if anyone would care to Follow me and simply RT what I put up etc.

Twitter is a good resource for reaching out to the general public and celebrities who sometimes RT or reply when they are doing so on behalf of a good cause.

For anyone not familiar with Twitter (I only came to it myself relatively recently) if a celebrity has a lot of Followers they may be able to reach so many people in one swoop.

For example Tony Hadley is @TheTonyHadley on Twitter. He has over 20,500 Followers. Whilst he doesn’t always tweet or RT much on HD matters he does sometimes if he sees them (not all tweets/RTs will be seen by people as the feed page can overtake quite quickly. By that token, the more tweets/RTs that may be sent to him, the more likely he is to see something. Shane Richie is quite good at responding to HD related tweets but the more the merrier...

It would be wonderful if people could use the hashtag #TrustMeImaRuby. It’s my own take on Trust me I’m a doctor. I have tried to make sure all the info in the daily photo and slideshow is trustworthy by putting the sources (NHS websites etc). At least try to mention Huntington’s disease or use a hashtag like #HDAwarenessWeek. Who knows... we may even get Ruby or the Awareness Week ‘trending’. #TheWomanisDeludingHerselfAgainlol


Be back on Thursday to post up the Blog link in here and on my Curse in Verse Thread

http://hdmessageboard.com/showthread.php?t=1638

TTFN
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Old 10-05-15, 03:59 PM   #2
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Default Re: 2015 HD NON-Awareness Week (11 - 17 May)

[QUOTE=Trish;59133]http://hda.org.uk/news?tag=awareness-week

It’s a shame there is nothing more listed than ‘Cake That to HD’ on the main HDA Home page features but I am sure there must be some out there doing stuff that they want to advertise on here?[QUOTE]

Hi Trish

The SHDA's are doing some form of palliative care training for people affected by hd - but only to professional groups.

But all that other cake malarkey is what's seen as fund-raising. Jeez, tea and cakes and coffee mornings whilst we're all cleaning up, laundering, replacing broken items, attending appointments, doing all the other things that come un-naturally to us.

BE AWARE - THIS IS AWARENESS - BEWARE

Just be alert and mindful .....

Rock on!

.
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Old 11-05-15, 12:28 AM   #3
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Default Re: 2015 HD Awareness Week (11 - 17 May)

Big Hello Trish

Like everyone else I'm sure, I've been thinking about you and wondering how you are, what you are up to and hoping you are okay - and Ruby & Ruby of course, seeing as I am cat mad

Now we know, still busy, busy, busy striving to find an end to HD - you are an inspiration. They do say good things come in small packages - no offence My thoughts are with you. x
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Old 11-05-15, 03:12 PM   #4
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Default Re: 2015 HD Awareness Week - and the imminent Newsletter

.

I couldn't think where to place this so as it's HDA stuff but not quite related to Awareness Week I thought it might sit well here.

The next HDA Newsletter is due in June. Should it have a “hot” title? [answers on a postcard please]

The Newsletter always displays the fun of fundraising in 20+ pages; the enjoyment of trips to Brazil for the elite; reprints of HD Buzz material from the HDB website – many, many pages; plus many small and unclear photographs, etc. The overall intent is excellent and beneficial – but some of this content is unnecessarily large. If it were reduced then the small photographs, for example, could be enlarged and seen more clearly.

I often wonder if Tony Hadley or Shane Ritchie have appeared on any of the TV shows where the celebs give their winnings to their chosen charity? If not, we need Proper Patrons who are always in the public eye – and who would give out correct and meaningful messages on a regular basis.

It’s all about the correct exposure, isn’t it? If the Newsletter were printed on less expensive paper then larger quantities could be available to the public at large – a larger circulation would have positive benefits too. I have been aware of the absence of any HDA material at the NHNN. I would have thought it possible to display HDA information leaflets, the Newsletter and a quality poster or two.

When I have finished reading my copy of the Newsletter I always leave it in the GP Surgery or at the local hospital. It’s a better read than Country Life or Horse & Hound!! Spread the news .....

It obviously looks as though I’m having a “good old moan” here but I’m not – it’s a long blast of constructive criticism. I hope it is seen as such by everyone.

PS HDA membership is free. All you need to do is download the form here or contact Head Office:

Huntington’s Disease Association Head Office
Suite 24, Liverpool Science Park, Innovation Centre 1, 131 Mount Pleasant, Liverpool, L3 5TF

Tel: 0151 331 5444
Email: info@hda.org.uk

.
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Old 12-05-15, 11:42 AM   #5
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Default Re: 2015 HD Awareness Week (11 - 17 May)

Hi Allan

Be aware, infact beware - he's on the rampage!! - and not being very mindful: I clicked into your earlier AWARENESS link and had a relaxing few spiritual moments with a mystic (I have christened him Yogi Beard - no offence intended) who was telling us all to move slowly, think slowly - Tai Chi everything up and everything will be lovely in the rose garden. He was actually quite funny - he said your so-called God built the world in 6 days and rested on the 7th, no mention of going to Church there! What he' saying is be nice to yourself and everyone 24/7, 7 days a week not just once in a while whilst meditating or praying and you'll find peace & happiness.

Sadly life ain't like that - sickness, poverty, natural disaster, murderers, rapists, terrorists - I could go on. And no doubt you all wish I wouldnt conspire against us all. And HbloodyD.

HD Awareness - well what can I say. I had never even heard of HD till last year and I was totally unaware then that Tony H and Shane R are patrons and spread the word coz I have seen them on telly, in articles and never once, to this day, was HD mentioned. So I am - what exactly do they do? Not very much it seems to little old me.

PS: can I have some of what your'e on Tiger?
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Old 12-05-15, 10:43 PM   #6
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Default Re: 2015 HD Awareness Week (11 - 17 May)

What a good idea Allan to take the newsletter to the doctors surgery, after it has been read.


I must admit on reflection although I have heard Shane Ritchie and Tony Hadley are patrons for HD, I can't say I have ever heard them shouting it from the rooftops and certainly have not seen them on any money fundraising quiz shows. As it is awareness month/week you would, have thought they would be doing loads and getting their profiles out and about.
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Old 14-05-15, 07:08 AM   #7
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Default Re: 2015 HD Awareness Week (11 - 17 May)

Quote:
Originally Posted by Cupcake View Post
What a good idea Allan to take the newsletter to the doctors surgery, after it has been read.


I must admit on reflection although I have heard Shane Ritchie and Tony Hadley are patrons for HD, I can't say I have ever heard them shouting it from the rooftops and certainly have not seen them on any money fundraising quiz shows. As it is awareness month/week you would, have thought they would be doing loads and getting their profiles out and about.
Hi peeps
Just to say that Spandau Ballet ( Tony Hadley) did donate a platinum disc (or similar) to be raffled for the HDA. It was advertised on the HDA facebook page. I asked the question how much was raised £250 was the reply.
Never heard any of them (SR or TH) mention HD on TV
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Old 14-05-15, 09:24 AM   #8
Trish
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Default Re: 2015 HD Awareness Week (11 - 17 May)

Quote:
Originally Posted by Trish View Post
[SIZE="3"]Hi everyone

For my own part, I have dabbled on YouTube again and knocked up the following which I will be putting out on FaceBook and Twitter from tomorrow (Monday 11th).

https://www.youtube.com/watch?v=A9baiji5hmQ

If you take a look you will see there are adapted photos of Ruby & Ruby-Tuesday for each day of the week, so I will post up a photo a day accordingly and also the video link in a separate post(s) so that it’s a double swipe as it were each day.

You will also spot the reference to Steve’s birthday on Thursday. I will be posting up a link to my latest blog on that day as I always do to remember Steve. It will be called The fairness of Awareness. I drafted it a little while back and am pleased to se from looking at some of the latest posts on Messy Board I have captured some of the stuff mentioned of late (Lisa Genova’s book and films about HD etc among other stuff.)


Be back on Thursday to post up the Blog link in here and on my Curse in Verse Thread

http://hdmessageboard.com/showthread.php?t=1638

TTFN
Hi All

Thank you to everyone who has been supporting my #HDAwarenessWeek / #TrustMeImaRuby campaign on Twitter & FB. Had quite a few shares and RTs. Even though I am not exactly shaking the world into awareness it's something I suppose.

As mentioned previously, today would have been Steve's 54th.

My latest Blog can be seen here. A rather long blog with lots of links although I suspect many of you will have seen most of the films/trailers/references already but nice to have in one place.

https://curseinverse.wordpress.com/2...-of-awareness/

Thanks also for your well wishes.

I believe the 'list' Jackie referred to in an earlier post may have been this on

http://hdmessageboard.com/showthread...ight=unrelated

TTFN
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Old 14-05-15, 08:23 PM   #9
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Default Re: 2015 HD Awareness Week (11 - 17 May)

Enjoyed the blog...if a little long but it was worth persevering. You are a star and so understanding and empathetic having suffered so much yourself. Well done you and thanks. xxx
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Old 18-05-15, 09:26 AM   #10
Trish
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Default Re: 2015 HD Awareness Week (11 - 17 May)

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Originally Posted by banda View Post
Enjoyed the blog...if a little long but it was worth persevering. You are a star and so understanding and empathetic having suffered so much yourself. Well done you and thanks. xxx
Thanks Banda

Sorry it was so long but glad you stuck with it and found it worthwhile.

I haven't suffered half as much as some in HD Land but that was more down to Steve being such a hero rather than any qualities on my part I reckon.

Another Awareness Week over and we had quite a few ReTweets and Shares on FaceBook which is all good from an awareness angle.

Raised another £60 for the HDA through Steve's JG Page too.

I was also thrilled to see the HDA used one of my poems in the new booklet they produced to complement their awareness theme and training - Care in Advanced HD (in professionals part - Factsheets area)

The poem comes under the last part - Quality of life - and closes the booklet as it were.

Thanks again for the support with my own little awareness effort. The 'cats' are blowing kisses.
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