Re: Re: another idea for making $$$

[Guest guest]

To All

This site fills a need that every person who has PSC or knows someone with PSC has. The need is Information and Knowledge, as well as the opportunity to hear from people who have "been there and had that". The amount of knowledge and experiences found in this group is astounding. But- I'm wondering , "Is It Marketable?"

Rather than signing t-shirts, which is a great idea, collecting ink cartridges, or shopping at stores that will donate a percentage of a sale, again good ideas, why don't we sell something we have and that other people need.

I would like to suggest we write a book. Actually, we have written a book, so I suggest we edit what is in the archives and investigate the possibility of publishing it as a group and have all profits added to the money already raised.

Such a book could have a format of gathering the questions people have asked and the answers that have been given. A section on how to do research, another on terminology. Also a section on what to ask the doctors, how to survive the first weeks after dx, a glossary of anagrams and tests. All the things we had to learn to survive, and the best of our advice and experiences.

I also suggest a title, "So, You Have PSC. So Do We."

There are many details we would have to work out, including how to get it published, and distributed. However, some one in this group must have some of that specialized knowledge, or knows some who knows someone.

I think the best fund raisers are when you sell something that is produced by the group. A band sells tickets to a concert, and PTA has bake sales. We have first hand knowledge that was gained by surviving, we want to share it, and we want to make money to reach a cure, so lets sell what we have, in a book.

What do you think?

MizKit

[Guest guest]

This does sound like a good idea to look into.

I would suggest "in addition to" as opposed to "Rather than" might be a

better approach. I doubt that any of the 100+ people that signed my

shirt would have bought a book on PSC. They are just two different

markets or opportunities. I wonder how many people in the US have PSC?

Worldwide? I wonder the maximum amount of books that could be sold at

what profit margin.

Mike "Check out my new About me webpage" Z

--

Mike Z

Mike Z, 34, PSC 99,

Severna Park, MD -About

Me-

cmp12305@... wrote:

Rather than signing t-shirts, which is a great idea, collecting

ink cartridges, or shopping at stores that will donate a percentage of

a sale, again good ideas, why don't we sell something we have and that

other people need.

What do you think?

MizKit

[Guest guest]

It sounds good to me, I have not been such

a major contributor yet (having just recently discovered and joined the group)

The pitch will have to be made broader

than PSC sufferers only, like this group, for the significant others who care about

PSC symptioms and characterisitics, treatments, trends, complications,

expectations, etc.

Regards,

-SJ

From:

[mailto: ]

On Behalf Of Mike Z

Sent: 18 February 2006 08:11 AM

To:

Subject: Re: Re:

another idea for making $$$

This does sound like a good idea to look into.

I would suggest " in addition to " as opposed to " Rather

than " might be a better approach. I doubt that any of the 100+ people that

signed my shirt would have bought a book on PSC. They are just two different markets

or opportunities. I wonder how many people in the US have PSC?

Worldwide? I wonder the maximum amount of books that could be sold at what

profit margin.

Mike " Check out my new About me webpage " Z

--

Mike

Z, 34, PSC 99, Severna Park, MD

-About Me-

cmp12305@...

wrote:

Rather than signing t-shirts, which is a great idea,

collecting ink cartridges, or shopping at stores that will donate a percentage

of a sale, again good ideas, why don't we sell something we have and that other

people need.

What do you think?

MizKit

[Guest guest]

Dear Mizkit,I have never written a book, but I know that it is an incredible amount of work and can take a long time. [ sometimes years] ! If we happened to have the special person in the group who could do it, that would be an incredibly generous thing do to for the effort it would take them. I agree with Mike that before it was considered you would want to do a market survey for projected sales and profit, otherwise it would be a true labor of love.Also as Mike says while the tee shirts, AAA and shopping are for everyone , for PSC the book would sell to a limited audience. I think it is a good idea it you were talking about staying with our personal experiences [ and I think you were] and staying away from the expert stuff.Using the archives is an idea if you are culling personal experiences but would it spread the work out better if we got people to write a couple of pages anew?Maybe a more narrowed topic, that is easier to put together and would take less time? One that spread out the work so everyone did a little?What if this "booklet" were a collection of our personal experiences and stories from helpful to serious to humorous? If each of us wrote a page or two and then someone compiled it, this might be something we could do without the time and expense or experts. The experiences could be categorized by subject so future patients could read say the section about  " Tales from Down Under " colonoscopies experiences before they went to have one.  Or "Where is Jacques Cousteau "  tales from the deep, ERCP experiences. You get the idea, we could add practical advice through just personal experience and we could get some clever people to infuse better humor like, , , JD and .I'm just thinking with you. You could list a bunch of topics from the archives. People could pick one and write on it. Members could use the archives for ideas.Someone would still need to pull it all together.Let's keep discussing it.Lee To All   This site fills a need that every person who has PSC or knows someone with PSC has.  The need is Information and Knowledge, as well as the opportunity to hear from people who have "been there and had that".  The amount of knowledge and experiences found in this group is astounding.  But- I'm wondering , "Is It Marketable?"   Rather than signing t-shirts, which is a great idea, collecting ink cartridges, or shopping at stores that will donate a percentage of a sale, again good ideas, why don't we sell something we have and that other people need.   I would like to suggest we write a book.  Actually, we have written a book, so I suggest we edit what is in the archives and investigate the possibility of publishing it as a group and have all profits added to the money already raised.   Such a book could have a format of gathering the questions people have asked and the answers that have been given.  A section on how to do research, another on terminology.  Also a section on what to ask the doctors, how to survive the first weeks after dx, a glossary of anagrams and tests.   All the things we had to learn to survive, and the best of our advice and experiences.   I also suggest a title, "So, You Have PSC.  So Do We."   There are many details we would have to work out, including how to get it published, and distributed.  However, some one in this group must have some of that specialized knowledge, or knows some who knows someone.   I think the best fund raisers are when you sell something that is produced by the group.  A band sells tickets to a concert, and PTA has bake sales.  We have first hand knowledge that was gained by surviving, we want to share it, and we want to make money to reach a cure, so lets sell what we have, in a book.   What do you think? MizKit  

[Guest guest]

-----Original Message----- I would like to suggest we write a book.

Please don’t get mad at me……just playing the devils

advocate.

How many of you have

already purchased a book on PSC? There was one published in 2002. Probably only a very few of you

have actually purchased it.

Why didn’t you buy the book? Didn’t know about it? Never thought to look for one? Or because you can find every

single “byte” of information on the internet and it’s so

current, reports, articles, studies etc are published within days of

writing them. By the time a

book could be published, some of its content would probably be outdated.

If you used stories, opinions

or experiences from group members, you would have to get everyone’s

permission to use them. Many

of our members have moved on, passed away or are no longer available to

us. So you would have to use only

those items where permission could be granted.

IMHO how many people would actually

go out and buy a book after Dx? The doc tells them PSC is rare (and

it is), so they probably wouldn’t even think to look for a book,

most of us haven’t.

Please don’t take me wrong…I’m not trying to be

mean in any way and would help in any way I could if we decide to do this. I love all money making ideas, just don’t

know how much money we could make off a book. After all, between ’s site, PSC

Partners and our group what more needs to be said? IMHO the oldest among the buying public - Baby Boomers – are wired, now

they read books for enjoyment, for information it’s the internet.

IMHO the very best way for PSC Partners to make money - is for

everyone to send some to them!! Lee

has/is doing an excellent job and we’re making strides every day. We have come quite a distance in a very short

time, thanks to Ricky, , Lee and all the people behind the scenes. Send money….

Hope I didn’t make anyone mad…..or upset,

Barb in Texas

P.S. To see the book “The Official Patient's

Sourcebook on Primary Sclerosing Cholangitis: A Revised and Updated Directory

for the Internet Age.”

Go to:

http://www.buy.com/retail/product.asp?sku=31106908 & SearchEngine=Froogle & SearchTerm=31106908 & Type=PE & Category=Book & dcaid=17379

[Guest guest]

Barb Henshaw wrote:

> 1. How many of you have already purchased a book on PSC? There was

> one published in 2002. Probably only a very few of you have

> actually purchased it. Why didn’t you buy the book? Didn’t know

> about it? Never thought to look for one? Or because you can find

> every single “byte” of information on the internet and it’s so

> current, reports, articles, studies etc are published within days

> of writing them. By the time a book could be published, some of

> its content would probably be outdated.

>

>

> P.S. To see the book “The Official Patient's Sourcebook on Primary

> Sclerosing Cholangitis: A Revised and Updated Directory for the Internet

> Age.” Go to:

>

>

http://www.buy.com/retail/product.asp?sku=31106908 & SearchEngine=Froogle & SearchTe\

rm=31106908 & Type=PE & Category=Book & dcaid=17379

Barb, I must say that I'm in total agreement with you on this issue.

Actually, when I was dx in 2001 I did go looking for a book and couldn't

find one. That's when I joined this group and have never gone back to

see if a book had been published in the meantime. I will definitely

check this out.

The points you make are all quite valid, not to mention very sensible. I

think you're right on target. The thing to do is make sure our drs. are

aware of this site so they can tell future patients, and getting active

with the fund-raising projects presently on the table.

Regards,

Carolyn B. in SC

[Guest guest]

Barb, I'm one of those who went looking for books immediately but the old fashioned way.I went to all our local book stores and bought a lot of books on UC and read a couple of paragraphs here and there on PSC. I never thought to look on line. Has anyone read this?Interesting. I agree that putting together a book of personal stories would take a dedicated person to do it right and even then there may not be a big enough market for them. Still, it is always good to explore the possibilities.I just want to say that everyday we are working hard to make Partners a success and you are a welcome part of the team. Thanks for handling our brochures. Everyone on this site can contribute in so many different ways. From giving advice and  support, to sharing new ideas to helping us fundraise.We have 34 walkers now in the Virtual Walk and one shirt in England. This is great. This walk is bringing in thousands of dollars and could give us our first big push towards a grant.We sure could use some more walkers. It really is fun and easy. Since everything is donated, your registration fee goes right to the foundation.If we got the other 65 shirts out there, that would be another $1,300 to the foundation! Just for getting the kit !We do need to be together in the fight, let's just do it.LeePlease don’t take me wrong…I’m not trying to be mean in any way and would help in any way I could if we decide to do this. I love all money making ideas, just don’t know how much money we could make off a book.  After all, between ’s site, PSC Partners and our group what more needs to be said?  IMHO the oldest among the buying public  - Baby Boomers – are wired, now they read books for enjoyment, for information it’s the internet.    IMHO the very best way for PSC Partners to make money - is for everyone to send some to them!!  Lee has/is doing an excellent job and we’re making strides every day.  We have come quite a distance in a very short time, thanks to Ricky, , Lee and all the people behind the scenes.  Send money….  Barb in Texas 

[Guest guest]

Lee

Thanks so much for the lift. I'd very likely be a "contributator"

Bestjd, 45UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3Southern, ILkrmpotich@...