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Old 15-08-10, 09:09 AM   #21
Trish
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Trish View Post
I need your help guys, and I need you to be honest as it could be a costly mistake if people just say 'go for it' being polite and don't follow through.

As you may know I produced the full set of poems and presented it to the HDA who kindly agreed to print copies for £2.50 and distribute using their admin staff and photocopy/binding facilities.

Take up has been slow but I can live with that. In terms of HDA use of resources, given there is little if any profit in doing it that way and certainly very limited marketing (although a big THANK YOU applies to the HDA for taking it on and putting it on the site and HDA Newsletter) I have been thinking about other methods of getting it produced and sold.

I was listening to Jeremy Vine on Radio 2 yesterday and he had an article about self publishing sites. In particular he focused on Grosvenor House Publishing and there was a lot of good feedback on how they work. For a fee of about £1,000 they will work with authors to produce printed copies of books and get them out into the public arena getting advertised on sites like Amazon.Com and Waterstones.

Lots of other companies do similar packages. I note Jimmy Pollard used Lulu but, as they are an American company, the feedback has come back a bit hit and miss in terms of UK users.

At a very rough calculation, I think if I could get it published through Grosvenor at £4.99 retail price it would make about £1 profit after print and retail costs. To that end it would take 1,000 copies sold to recover my costs.

I'm prepared to take a bit of a loss in order to get it out there but obviously I can't afford the full £1,000 hit ANYTHING over the costs of producing etc (total profit after outgoings) would go to the HDA so if I sold more than 1,000 based on my rough costs it would be fantastic but I am a realist and know that could be years down the line

Here's where I need your help.

Over the next six weeks, could visitors to this site please take a look at some of the poems following the links on various posts further up this Thread and let me know if you think it's worthwhile persuing and, if published, would you be willing to buy when out there? I will also put up a link to a poem a day.

If I get 50 positive responses from individuals between now end September I will take a big leap of faith and go for it. If not, I will happily leave the status quo.

Whatever the case, I'd welcome comments in here or the TRIOND (Authspot)site who host my on-line poems and am very keen to have someone with a better grasp of grammar to spot the deliberate mistakes

[
Here's is the link for day 2

The Sufferer:

http://authspot.com/poetry/curse-in-verse-the-sufferer/
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Old 16-08-10, 08:54 AM   #22
Trish
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Trish View Post
I need your help guys, and I need you to be honest as it could be a costly mistake if people just say 'go for it' being polite and don't follow through.

As you may know I produced the full set of poems and presented it to the HDA who kindly agreed to print copies for £2.50 and distribute using their admin staff and photocopy/binding facilities.

Take up has been slow but I can live with that. In terms of HDA use of resources, given there is little if any profit in doing it that way and certainly very limited marketing (although a big THANK YOU applies to the HDA for taking it on and putting it on the site and HDA Newsletter) I have been thinking about other methods of getting it produced and sold.

I was listening to Jeremy Vine on Radio 2 yesterday and he had an article about self publishing sites. In particular he focused on Grosvenor House Publishing and there was a lot of good feedback on how they work. For a fee of about £1,000 they will work with authors to produce printed copies of books and get them out into the public arena getting advertised on sites like Amazon.Com and Waterstones.

Lots of other companies do similar packages. I note Jimmy Pollard used Lulu but, as they are an American company, the feedback has come back a bit hit and miss in terms of UK users.

At a very rough calculation, I think if I could get it published through Grosvenor at £4.99 retail price it would make about £1 profit after print and retail costs. To that end it would take 1,000 copies sold to recover my costs.

I'm prepared to take a bit of a loss in order to get it out there but obviously I can't afford the full £1,000 hit ANYTHING over the costs of producing etc (total profit after outgoings) would go to the HDA so if I sold more than 1,000 based on my rough costs it would be fantastic but I am a realist and know that could be years down the line

Here's where I need your help.

Over the next six weeks, could visitors to this site please take a look at some of the poems following the links on various posts further up this Thread and let me know if you think it's worthwhile persuing and, if published, would you be willing to buy when out there? I will also put up a link to a poem a day.

If I get 50 positive responses from individuals between now end September I will take a big leap of faith and go for it. If not, I will happily leave the status quo.

Whatever the case, I'd welcome comments in here or the TRIOND (Authspot)site who host my on-line poems and am very keen to have someone with a better grasp of grammar to spot the deliberate mistakes

]

Here is the link for day 3

The Generations.

I originally had the parent of the child as the mother. However, I noted the cases of JHD in here tended to reflect the gene had been passed down to the child by the father so changed it to reflect that.

http://authspot.com/poetry/curse-in-...e-generations/
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Old 17-08-10, 01:12 PM   #23
Trish
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Trish View Post
I need your help guys, and I need you to be honest as it could be a costly mistake if people just say 'go for it' being polite and don't follow through.

As you may know I produced the full set of poems and presented it to the HDA who kindly agreed to print copies for £2.50 and distribute using their admin staff and photocopy/binding facilities.

Take up has been slow but I can live with that. In terms of HDA use of resources, given there is little if any profit in doing it that way and certainly very limited marketing (although a big THANK YOU applies to the HDA for taking it on and putting it on the site and HDA Newsletter) I have been thinking about other methods of getting it produced and sold.

I was listening to Jeremy Vine on Radio 2 yesterday and he had an article about self publishing sites. In particular he focused on Grosvenor House Publishing and there was a lot of good feedback on how they work. For a fee of about £1,000 they will work with authors to produce printed copies of books and get them out into the public arena getting advertised on sites like Amazon.Com and Waterstones.

Lots of other companies do similar packages. I note Jimmy Pollard used Lulu but, as they are an American company, the feedback has come back a bit hit and miss in terms of UK users.

At a very rough calculation, I think if I could get it published through Grosvenor at £4.99 retail price it would make about £1 profit after print and retail costs. To that end it would take 1,000 copies sold to recover my costs.

I'm prepared to take a bit of a loss in order to get it out there but obviously I can't afford the full £1,000 hit ANYTHING over the costs of producing etc (total profit after outgoings) would go to the HDA so if I sold more than 1,000 based on my rough costs it would be fantastic but I am a realist and know that could be years down the line

Here's where I need your help.

Over the next six weeks, could visitors to this site please take a look at some of the poems following the links on various posts further up this Thread and let me know if you think it's worthwhile persuing and, if published, would you be willing to buy when out there? I will also put up a link to a poem a day.

If I get 50 positive responses from individuals between now end September I will take a big leap of faith and go for it. If not, I will happily leave the status quo.

Whatever the case, I'd welcome comments in here or the TRIOND (Authspot)site who host my on-line poems and am very keen to have someone with a better grasp of grammar to spot the deliberate mistakes

]
Today's link is for The Carer

It has been put on today as it happens to be next in the list.

I won't be going into details but never has a link been more timely!

http://authspot.com/poetry/curse-in-verse-the-carer/
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Old 18-08-10, 08:28 AM   #24
Trish
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Trish View Post
I need your help guys, and I need you to be honest as it could be a costly mistake if people just say 'go for it' being polite and don't follow through.

As you may know I produced the full set of poems and presented it to the HDA who kindly agreed to print copies for £2.50 and distribute using their admin staff and photocopy/binding facilities.

Take up has been slow but I can live with that. In terms of HDA use of resources, given there is little if any profit in doing it that way and certainly very limited marketing (although a big THANK YOU applies to the HDA for taking it on and putting it on the site and HDA Newsletter) I have been thinking about other methods of getting it produced and sold.

I was listening to Jeremy Vine on Radio 2 yesterday and he had an article about self publishing sites. In particular he focused on Grosvenor House Publishing and there was a lot of good feedback on how they work. For a fee of about £1,000 they will work with authors to produce printed copies of books and get them out into the public arena getting advertised on sites like Amazon.Com and Waterstones.

Lots of other companies do similar packages. I note Jimmy Pollard used Lulu but, as they are an American company, the feedback has come back a bit hit and miss in terms of UK users.

At a very rough calculation, I think if I could get it published through Grosvenor at £4.99 retail price it would make about £1 profit after print and retail costs. To that end it would take 1,000 copies sold to recover my costs.

I'm prepared to take a bit of a loss in order to get it out there but obviously I can't afford the full £1,000 hit ANYTHING over the costs of producing etc (total profit after outgoings) would go to the HDA so if I sold more than 1,000 based on my rough costs it would be fantastic but I am a realist and know that could be years down the line

Here's where I need your help.

Over the next six weeks, could visitors to this site please take a look at some of the poems following the links on various posts further up this Thread and let me know if you think it's worthwhile persuing and, if published, would you be willing to buy when out there? I will also put up a link to a poem a day.

If I get 50 positive responses from individuals between now end September I will take a big leap of faith and go for it. If not, I will happily leave the status quo.

Whatever the case, I'd welcome comments in here or the TRIOND (Authspot)site who host my on-line poems and am very keen to have someone with a better grasp of grammar to spot the deliberate mistakes

]
And here is the link for todays' poem

The Baby

http://authspot.com/poetry/curse-in-verse-the-baby/
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Old 19-08-10, 09:22 AM   #25
Trish
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Trish View Post
I need your help guys, and I need you to be honest as it could be a costly mistake if people just say 'go for it' being polite and don't follow through.

As you may know I produced the full set of poems and presented it to the HDA who kindly agreed to print copies for £2.50 and distribute using their admin staff and photocopy/binding facilities.

Take up has been slow but I can live with that. In terms of HDA use of resources, given there is little if any profit in doing it that way and certainly very limited marketing (although a big THANK YOU applies to the HDA for taking it on and putting it on the site and HDA Newsletter) I have been thinking about other methods of getting it produced and sold.

I was listening to Jeremy Vine on Radio 2 yesterday and he had an article about self publishing sites. In particular he focused on Grosvenor House Publishing and there was a lot of good feedback on how they work. For a fee of about £1,000 they will work with authors to produce printed copies of books and get them out into the public arena getting advertised on sites like Amazon.Com and Waterstones.

Lots of other companies do similar packages. I note Jimmy Pollard used Lulu but, as they are an American company, the feedback has come back a bit hit and miss in terms of UK users.

At a very rough calculation, I think if I could get it published through Grosvenor at £4.99 retail price it would make about £1 profit after print and retail costs. To that end it would take 1,000 copies sold to recover my costs.

I'm prepared to take a bit of a loss in order to get it out there but obviously I can't afford the full £1,000 hit ANYTHING over the costs of producing etc (total profit after outgoings) would go to the HDA so if I sold more than 1,000 based on my rough costs it would be fantastic but I am a realist and know that could be years down the line

Here's where I need your help.

Over the next six weeks, could visitors to this site please take a look at some of the poems following the links on various posts further up this Thread and let me know if you think it's worthwhile persuing and, if published, would you be willing to buy when out there? I will also put up a link to a poem a day.

If I get 50 positive responses from individuals between now end September I will take a big leap of faith and go for it. If not, I will happily leave the status quo.

Whatever the case, I'd welcome comments in here or the TRIOND (Authspot)site who host my on-line poems and am very keen to have someone with a better grasp of grammar to spot the deliberate mistakes
The next poem - The Awareness Dream - was written on 26th October 2009. Quite a while before the HiDden No More slogan was used in the APPG event.

I'd like to think I was trying to reflect the same thing

Extract:


The sadness felt inside,

That whilst awareness is the key,

So many want to hide.



The shame felt by those suffering;

The name that is unspoken.

Society has made them scared,

Their minds and spirit broken.

The full poem can be seen here:

http://authspot.com/poetry/curse-in-...areness-dream/
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Old 20-08-10, 08:40 AM   #26
Trish
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Trish View Post
I need your help guys, and I need you to be honest as it could be a costly mistake if people just say 'go for it' being polite and don't follow through.

As you may know I produced the full set of poems and presented it to the HDA who kindly agreed to print copies for £2.50 and distribute using their admin staff and photocopy/binding facilities.

Take up has been slow but I can live with that. In terms of HDA use of resources, given there is little if any profit in doing it that way and certainly very limited marketing (although a big THANK YOU applies to the HDA for taking it on and putting it on the site and HDA Newsletter) I have been thinking about other methods of getting it produced and sold.

I was listening to Jeremy Vine on Radio 2 yesterday and he had an article about self publishing sites. In particular he focused on Grosvenor House Publishing and there was a lot of good feedback on how they work. For a fee of about £1,000 they will work with authors to produce printed copies of books and get them out into the public arena getting advertised on sites like Amazon.Com and Waterstones.

Lots of other companies do similar packages. I note Jimmy Pollard used Lulu but, as they are an American company, the feedback has come back a bit hit and miss in terms of UK users.

At a very rough calculation, I think if I could get it published through Grosvenor at £4.99 retail price it would make about £1 profit after print and retail costs. To that end it would take 1,000 copies sold to recover my costs.

I'm prepared to take a bit of a loss in order to get it out there but obviously I can't afford the full £1,000 hit ANYTHING over the costs of producing etc (total profit after outgoings) would go to the HDA so if I sold more than 1,000 based on my rough costs it would be fantastic but I am a realist and know that could be years down the line

Here's where I need your help.

Over the next six weeks, could visitors to this site please take a look at some of the poems following the links on various posts further up this Thread and let me know if you think it's worthwhile persuing and, if published, would you be willing to buy when out there? I will also put up a link to a poem a day.

If I get 50 positive responses from individuals between now end September I will take a big leap of faith and go for it. If not, I will happily leave the status quo.

Whatever the case, I'd welcome comments in here or the TRIOND (Authspot)site who host my on-line poems and am very keen to have someone with a better grasp of grammar to spot the deliberate mistakes

Todays' link is for The Hope

Thanks to people like Nancy Wexler and the Genome poject there is real hope now that a cure is moving forward at an amazing rate.

It may not be tomorrow but it is now within reach which is always worth remembering given only a few generations back (as the Wexler's books illustrate) Huntington's didn't even have a name.

http://authspot.com/poetry/curse-in-verse-the-hope/
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Old 20-08-10, 01:30 PM   #27
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Trish View Post
Todays' link is for The Hope

Thanks to people like Nancy Wexler and the Genome poject there is real hope now that a cure is moving forward at an amazing rate.

It may not be tomorrow but it is now within reach which is always worth remembering given only a few generations back (as the Wexler's books illustrate) Huntington's didn't even have a name.

http://authspot.com/poetry/curse-in-verse-the-hope/
hiyyaa:) i thhink thhat itt is always goodd to hhavve hopeee of a curee buut thhis willl takke a lott off timme annd time is onne thhinng that i donnt hhave x
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Old 20-08-10, 04:55 PM   #28
Trish
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Default Re: Curse in Verse - the poetry of HD

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hiyyaa:) i thhink thhat itt is always goodd to hhavve hopeee of a curee buut thhis willl takke a lott off timme annd time is onne thhinng that i donnt hhave x
Never give up hope hunny.

With help in getting your food/weight sorted (I hope Sue was able to help when down) and better medication alongside all the good stuff like Disney and Tommy and Olivia making you smile counts towards buying you time.
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Old 21-08-10, 10:31 AM   #29
Trish
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Trish View Post
I need your help guys, and I need you to be honest as it could be a costly mistake if people just say 'go for it' being polite and don't follow through.

As you may know I produced the full set of poems and presented it to the HDA who kindly agreed to print copies for £2.50 and distribute using their admin staff and photocopy/binding facilities.

Take up has been slow but I can live with that. In terms of HDA use of resources, given there is little if any profit in doing it that way and certainly very limited marketing (although a big THANK YOU applies to the HDA for taking it on and putting it on the site and HDA Newsletter) I have been thinking about other methods of getting it produced and sold.

I was listening to Jeremy Vine on Radio 2 yesterday and he had an article about self publishing sites. In particular he focused on Grosvenor House Publishing and there was a lot of good feedback on how they work. For a fee of about £1,000 they will work with authors to produce printed copies of books and get them out into the public arena getting advertised on sites like Amazon.Com and Waterstones.

Lots of other companies do similar packages. I note Jimmy Pollard used Lulu but, as they are an American company, the feedback has come back a bit hit and miss in terms of UK users.

At a very rough calculation, I think if I could get it published through Grosvenor at £4.99 retail price it would make about £1 profit after print and retail costs. To that end it would take 1,000 copies sold to recover my costs.

I'm prepared to take a bit of a loss in order to get it out there but obviously I can't afford the full £1,000 hit ANYTHING over the costs of producing etc (total profit after outgoings) would go to the HDA so if I sold more than 1,000 based on my rough costs it would be fantastic but I am a realist and know that could be years down the line

Here's where I need your help.

Over the next six weeks, could visitors to this site please take a look at some of the poems following the links on various posts further up this Thread and let me know if you think it's worthwhile persuing and, if published, would you be willing to buy when out there? I will also put up a link to a poem a day.

If I get 50 positive responses from individuals between now end September I will take a big leap of faith and go for it. If not, I will happily leave the status quo.

Whatever the case, I'd welcome comments in here or the TRIOND (Authspot)site who host my on-line poems and am very keen to have someone with a better grasp of grammar to spot the deliberate mistakes
Today's poem, The Fighter, leads on from 'The Hope' but covers those not waiting for science and the medical professsion. They are using alternative medicine (supplements like blueberries; creatine; Omega 3) to try halting the progress of HD.

It touches on our GPs etc thinking we are being stupid at times but, from my own experience, had I not sought out creatine myself to give in advance of the sign off by FDA it would have been too late to help my hubby. I do believe it has helped me give hubby the quality of life he needs. Use the search facility at the top of the page and search under creatine if you want to read people's stories about it.

Like I say at the end of the poem... I bet if it were they who had HD they'd be taking everything under the sun whether it had pharmaceutical sign off or not!

http://authspot.com/poetry/curse-in-verse-the-fighter/
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Old 01-09-10, 09:02 PM   #30
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Default Re: Curse in Verse - the poetry of HD

In the absence of posts and PM replies I was a bit worried about Trish. Especially when I read these latest poems.

http://authspot.com/poetry/the-night-fighter/

http://authspot.com/poetry/cheating-life/


I managed to get hold of her through the site. I've been reassured that she and Steve are okay and the poems she recently submitted were written a while back. Apparently there's a bonus thing on at the moment with submitting stuff on Triond and she is trying to whack on material

She said she would be back in a while, sends her love to all, and then asked if I would add links here now and again for her. Cheeky cow

Here's a few I have added at random. The first one is one of my favourites. I watched a programme a while back with Gerry Robertson, Robinson whoever. Anyway, the guy was looking at nursing homes where people had conditions like altziemers and it was shocking what he uncovered. They closed the place down in the end!

http://authspot.com/poetry/curse-in-verse-the-help/

http://authspot.com/poetry/curse-in-...tient-patient/

http://authspot.com/poetry/curse-in-verse-the-hunger/

http://authspot.com/poetry/curse-in-verse-big-brother/

http://authspot.com/poetry/curse-in-verse-the-teacher/
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