** ALL READ ** ANSWERS FROM THE BOARD OF DIRECTORS *************

[Guest guest]

I would like to say as a member of the support group and the Vice President of

the International Still's Disease Foundation, Inc. that I and others; as

officers of this foundation and moderators of the support group, function as a

whole. We support the rules and regulations, we govern the foundation, and the

group for good reasons. We do not have these rules and guidelines in place to be

mean, petty or unkind, they come from experience and a necessity to run the

foundation and group for the betterment of all.

We are as you, family, and a family that works endless hours at times with love

and support for hundreds we often don't even know. We do many things that others

aren't aware of and we do it because we love this foundation, the people, and

what you mean in our lives. We, the board of directors, stand together through

trials, illness and mistakes in hopes of doing our best to help others.

Marty, in answer to your second email we, the Board of the International Still's

Foundation, Inc., takes some time in regards to matters of business with Board

members that are in many states and another country. Some work and all have

Still's and/or other health issues. We do not fire back answers to such serious

allegations without due consideration of the facts and majority votes from our

Board of directors and this takes time.

There have been predators that have come to our group in the past wishing to

exploit our members' information without permission or without proper

credentials. Sometimes we have to protect others' interests and due to legal

concerns this is, at times, without sharing all the information with the support

group members. I, aka , would like to have it known that I will

stand behind any decisions I have ever made to protect this foundation and it's

support group members at any time. I know that I have the support of my fellow

board members as they do mine.

The following is a collaboration written by Bob Himes, Secretary/Treasurer,

Kathleen Brown, Nursing Director and Boerner, aka , Vice

President, and so voted by majority.

Marty I, Bob Himes, am going to try to answer your e-mail as best I can and

incorporate it into Patty and Kathleen's answers. I don't want this to be

confrontational. I just want it to be answering your questions as best we can

since the Foundation is a non-profit, non paying membership Corporation.

First of all as Patty said the Board has only banned one person; except for

spammers, from this group, forum, list whatever you want to call it? This person

was banned as he was using our group to spout Political and Religious garbage

about the United States. Prior to being banned; he was asked to not use our

group to antagonize the membership as a whole with his personal agendas. This

was causing a breakdown of our group.

And to answer another question further; " NO " Hayduke has not been banned,

and whoever said that he was does not have their facts straight. One of our

rules when joining the group is that we reserve the right to cut off discussions

that are not beneficial to the group as a whole. But we have not done that.

As matter of fact I haven't seen many e-mails on here yet that had all their

facts straight.

No one has ever said that the Board was the owners of " your " personal stories;

however, when they are posted on our web site, as some of them are, they are

protected under our Copyright. That means that no one can take the information

from our international web site without our written permission. You or anyone

may personally or privately give your/their own information to anyone you/they

wish and no one on this Board is saying that you or they cannot!

When has anyone answered any of your questions with " BS " ? Your words not mine.

Can you give me an example?

Again this Board has not said that cannot use anyone's stories and if he

told you that he is wrong. We also have NOT told he can not write a book.

We do not feel he should use this group to exploit our members for the purposes

of gaining information for his book. We stated if he wants to obtain information

from people for his book it needs to be done on a private basis; not within the

group forum.

Marty in Carole Triller's e-mail to Hayduke she does say that was less

than complimentary with the medical profession and she doesn't believe the

booklet should reflect criticism but she didn't say he couldn't do it.

I don't understand your question about wanting the Board to explain when the

Board " started to do censorship on the ability of people to contact others to

further passing of information, understanding of what it is like to go threw the

stages of stills from the start as being scared to death and not knowing any

thing, to over trusting doctors to were it dam near kills you as in my case, to

full acceptant of living with stills and being adjusted to the life as it dose

not happen one step nor over night but in a long path and with many steps! "

My question is who have we censored and when and how?

The same applies for when you ask the Board to explain " why one Board member

says something can not be done yet another one seams to be able to do the very

thing at will " .

What was done, by who and when and maybe I can answer it?

I would like to answer all of your questions but I can't because I don't have

all the information?

Another one, " Also add to it why it seems for the most part the over ruling is

by two Board members for the most part and if you want to prove this as wrong

then post up the votes. "

What was over ruled, by who, when? I can't answer your question.

" Fact is I want the Board to post up the votes of all Board members for the last

5 years along with each subject that was voted on. "

Marty I have nothing to hide and I have a record of everything including all the

votes that were taken all the way back to when I incorporated the Foundation as

a non-profit, non-paying, non-voting membership: which means the only voting

members are the Board of Directors. As to the previous years voting records,

they are in my crawl space attic, packed in boxes with all the other records and

due to my health I am not about to try to get them down and go through them.

Since I answer to the Board if they direct me to get them out, I will hire

someone to get them down for me.

As for the Financial records, they have always been available at every

Conference that has been held and I have started every Conference off by stating

that. I also have stated before that the Financial records are always available

and given a reasonable amount of time I will pay for the reproduction of the

copies and provide them to those that request them.

As for providing you information on the Donations: I can provide you the amounts

only, because some of the donors requested their names be kept confidential. The

only ones they are available to are myself, the IRS, and the Florida State Tax

people. By the way, there is no law stating that I have to provide this within 5

working days for a non-paying member Corporation!

A bank statement is sent to each Board member Monthly, Quarterly and Yearly

along with a Tax Statement each year. It used to be that if we were under

$25,000.00 we did not have to file but that has been changed and everyone has to

file, which I think is only right.

What project did the Board or Rogue member stop? When and who was it, what lies

were told? Marty I want to help and get this straightened out but I can't do it

without specifics?

Stop all Donations and Volunteerism from any member?

Since 1 Jan 2011 we have received 19 Donations, that's for 5 months and 6 of

those donations were from Board members or their Families and one was from ink

cartridges that I sent in for reclamation. And that is not counting the supplies

contributed by each Board member so they can do their jobs. In total we took in

$693.01 and total expenditures was $861.30.

I am going to jump down to the part about the web site because there is a lot

that you and others don't know about it and it's time you found out.

In 2002 one of our members offered in good faith, her boyfriends services to

take care of our web site: rebuilding; repairing; updating it, etc. Well for the

first two years everything went along fine and things got done well. Sometime in

2004 things started slowing down and it became harder to get changes made.

Contact was harder with this boyfriend and I guess it was chalked up to his

being busy. Then sometime in 2006 contact ceased and all attempts to contact

this person were met with a stone wall. All sorts of problems came up with the

way the contacts were attempted. People were sending fiery e-mails to the

boyfriend and then the member got all upset about it and it turns out that our

web site was held hostage so to speak. I personally tried home phone, cell

phone, fax, and left messages numerous times but all to no avail. In the latter

part of 2010 I found the telephone number of the partner of this boyfriend and I

had a friend of mine, who we'll call Rad; who is a Senior IT for IBM, who agreed

to help me contact the partner. Since then Rad has moved the entire web site

from the boyfriends server to his server and is presently trying, as his time

from work permits, getting all of our web site transferred and copied to his web

site. Once this is done we will have it transferred in total to our own server.

The server will be free of charge since we are NPO. In the meantime we have been

making tons of changes to the web site and why you haven't seen any changes I

don't know but they have been made and they are continuing. I wish that everyone

knew what was involved in transferring an entire web site twice and especially a

web site as large as ours. It is over 100 pages.. So what have we been doing? On

the subject of members histories on the international web site: some people have

asked that their stories be removed, and have revoked the permission for them to

be used. We have been unable to do that because of the circumstances outlined

above; however, we will be able to soon.

What ground breaking things have we the Board done?

Well, I send out approximately 5000 Brochures per year to every Country in the

World. We now have Doctors referring patients to our web site. We are working on

a possible sponsor for the Foundation, but you don't see or hear about that

because we are not supposed to get hopes up in case they fall through. If this

sponsorship falls through I can hear it now: " Wow, the Board really screwed that

up didn't they? " We facilitate and donate time for Chat moderation; moderate the

Still's support group; send out gifts & cards; and make phone calls to members.

We maintain a crisis line and more. All of these things are done on a volunteer

basis. If you can't list one thing we did Marty you aren't reading enough, not

reading the right things, or your listening to the wrong people.

No one is going to ban you and the only way you can leave this list is if you

un-subscribe yourself, which I hope you don't. You add a lot to this group and I

understand your wanting answers, but before I give you answers I need to know

what you want. The same with ; the only way he can leave this group is if he

unsubscribed himself, which I hope he doesn't do. He has a hell of an idea. If I

was him I would have probably reacted the same way that he did until I sat down

and digested everything and " didn't read between the lines " ! Perhaps the letter

to wasn't worded the best but the foundation has taken accusations that

were a bit one sided without the chance to respond.

" ...to further this foundation in two ways one in increasing the knowledge about

stills in the medical world and the other in the memberships knowledge of what

is going on in the medical world on stills such as studies ,trials, research

ect. I am not talking about what has happened I mean as in what is coming up and

what is needed such as volunteers for studies, trials ect. so far the only time

I have seen any thing about these topics is when a member post on them not the

board passing information in a timely fashion. nor are any posted on the web

sigh but then too that is and has been so out of date that even the... "

Our recently returned nursing director, Kathleen Brown, posted on May 17, 2011

at 9:40 to the Yahoo Still's support group a current recruiting study to include

Still's patients and the National Institute of Health. She had been voted back

onto the Board of directors at that time and the support group had been

notified. Kathleen Brown has done numerous hours of research for her posts in

the short amount of time since her return just several months ago.

The foundation also has a European liaison working with us now on future

projects. The group was notified of several months ago but all new developments

such as putting together expanded conferences, if there are to be any

considering the lack of funding, take time.

Tom, Uncle Fuzzy, has done many, many posts about medical information that has

been very helpful to many over the years and posted informative articles at the

files section of the web site. We do have polls at the yahoo site and few to

none vote. We have added new features to the site like the mapping of members

who wish to add their contact information. We do have links and files pages that

others can use. We did design a new dragon logo on our programs that do get

distributed worldwide with foundation funding and so much more that is not

readily apparent without listing every single job we do!

Thanks for your input and let me know what you want and I will get it together

for you.

International Still's Disease Foundation, Inc. Board of Directors

[Guest guest]

Well said. Perhaps I should have waited till after I had my coffee to post. Nah.

[Guest guest]

To: stillsdisease

From: windsinging@...

Date: Sat, 4 Jun 2011 06:55:32 -0700

Subject: ** ALL READ ** ANSWERS FROM THE BOARD OF DIRECTORS

*************

I would like to say as a member of the support group and the Vice President of

the International Still's Disease Foundation, Inc. that I and others; as

officers of this foundation and moderators of the support group, function as a

whole. We support the rules and regulations, we govern the foundation, and the

group for good reasons. We do not have these rules and guidelines in place to be

mean, petty or unkind, they come from experience and a necessity to run the

foundation and group for the betterment of all.

We are as you, family, and a family that works endless hours at times with love

and support for hundreds we often don't even know. We do many things that others

aren't aware of and we do it because we love this foundation, the people, and

what you mean in our lives. We, the board of directors, stand together through

trials, illness and mistakes in hopes of doing our best to help others.

Marty, in answer to your second email we, the Board of the International Still's

Foundation, Inc., takes some time in regards to matters of business with Board

members that are in many states and another country. Some work and all have

Still's and/or other health issues. We do not fire back answers to such serious

allegations without due consideration of the facts and majority votes from our

Board of directors and this takes time.

There have been predators that have come to our group in the past wishing to

exploit our members' information without permission or without proper

credentials. Sometimes we have to protect others' interests and due to legal

concerns this is, at times, without sharing all the information with the support

group members. I, aka , would like to have it known that I will

stand behind any decisions I have ever made to protect this foundation and it's

support group members at any time. I know that I have the support of my fellow

board members as they do mine.

The following is a collaboration written by Bob Himes, Secretary/Treasurer,

Kathleen Brown, Nursing Director and Boerner, aka , Vice

President, and so voted by majority.

Marty I, Bob Himes, am going to try to answer your e-mail as best I can and

incorporate it into Patty and Kathleen's answers. I don't want this to be

confrontational. I just want it to be answering your questions as best we can

since the Foundation is a non-profit, non paying membership Corporation.

First of all as Patty said the Board has only banned one person; except for

spammers, from this group, forum, list whatever you want to call it? This person

was banned as he was using our group to spout Political and Religious garbage

about the United States. Prior to being banned; he was asked to not use our

group to antagonize the membership as a whole with his personal agendas. This

was causing a breakdown of our group.

And to answer another question further; " NO " Hayduke has not been banned,

and whoever said that he was does not have their facts straight. One of our

rules when joining the group is that we reserve the right to cut off discussions

that are not beneficial to the group as a whole. But we have not done that.

As matter of fact I haven't seen many e-mails on here yet that had all their

facts straight.

No one has ever said that the Board was the owners of " your " personal stories;

however, when they are posted on our web site, as some of them are, they are

protected under our Copyright. That means that no one can take the information

from our international web site without our written permission. You or anyone

may personally or privately give your/their own information to anyone you/they

wish and no one on this Board is saying that you or they cannot!

When has anyone answered any of your questions with " BS " ? Your words not mine.

Can you give me an example?

Again this Board has not said that cannot use anyone's stories and if he

told you that he is wrong. We also have NOT told he can not write a book.

We do not feel he should use this group to exploit our members for the purposes

of gaining information for his book. We stated if he wants to obtain information

from people for his book it needs to be done on a private basis; not within the

group forum.

Marty in Carole Triller's e-mail to Hayduke she does say that was less

than complimentary with the medical profession and she doesn't believe the

booklet should reflect criticism but she didn't say he couldn't do it.

I don't understand your question about wanting the Board to explain when the

Board " started to do censorship on the ability of people to contact others to

further passing of information, understanding of what it is like to go threw the

stages of stills from the start as being scared to death and not knowing any

thing, to over trusting doctors to were it dam near kills you as in my case, to

full acceptant of living with stills and being adjusted to the life as it dose

not happen one step nor over night but in a long path and with many steps! "

My question is who have we censored and when and how?

The same applies for when you ask the Board to explain " why one Board member

says something can not be done yet another one seams to be able to do the very

thing at will " .

What was done, by who and when and maybe I can answer it?

I would like to answer all of your questions but I can't because I don't have

all the information?

Another one, " Also add to it why it seems for the most part the over ruling is

by two Board members for the most part and if you want to prove this as wrong

then post up the votes. "

What was over ruled, by who, when? I can't answer your question.

" Fact is I want the Board to post up the votes of all Board members for the last

5 years along with each subject that was voted on. "

Marty I have nothing to hide and I have a record of everything including all the

votes that were taken all the way back to when I incorporated the Foundation as

a non-profit, non-paying, non-voting membership: which means the only voting

members are the Board of Directors. As to the previous years voting records,

they are in my crawl space attic, packed in boxes with all the other records and

due to my health I am not about to try to get them down and go through them.

Since I answer to the Board if they direct me to get them out, I will hire

someone to get them down for me.

As for the Financial records, they have always been available at every

Conference that has been held and I have started every Conference off by stating

that. I also have stated before that the Financial records are always available

and given a reasonable amount of time I will pay for the reproduction of the

copies and provide them to those that request them.

As for providing you information on the Donations: I can provide you the amounts

only, because some of the donors requested their names be kept confidential. The

only ones they are available to are myself, the IRS, and the Florida State Tax

people. By the way, there is no law stating that I have to provide this within 5

working days for a non-paying member Corporation!

A bank statement is sent to each Board member Monthly, Quarterly and Yearly

along with a Tax Statement each year. It used to be that if we were under

$25,000.00 we did not have to file but that has been changed and everyone has to

file, which I think is only right.

What project did the Board or Rogue member stop? When and who was it, what lies

were told? Marty I want to help and get this straightened out but I can't do it

without specifics?

Stop all Donations and Volunteerism from any member?

Since 1 Jan 2011 we have received 19 Donations, that's for 5 months and 6 of

those donations were from Board members or their Families and one was from ink

cartridges that I sent in for reclamation. And that is not counting the supplies

contributed by each Board member so they can do their jobs. In total we took in

$693.01 and total expenditures was $861.30.

I am going to jump down to the part about the web site because there is a lot

that you and others don't know about it and it's time you found out.

In 2002 one of our members offered in good faith, her boyfriends services to

take care of our web site: rebuilding; repairing; updating it, etc. Well for the

first two years everything went along fine and things got done well. Sometime in

2004 things started slowing down and it became harder to get changes made.

Contact was harder with this boyfriend and I guess it was chalked up to his

being busy. Then sometime in 2006 contact ceased and all attempts to contact

this person were met with a stone wall. All sorts of problems came up with the

way the contacts were attempted. People were sending fiery e-mails to the

boyfriend and then the member got all upset about it and it turns out that our

web site was held hostage so to speak. I personally tried home phone, cell

phone, fax, and left messages numerous times but all to no avail. In the latter

part of 2010 I found the telephone number of the partner of this boyfriend and I

had a friend of mine, who we'll call Rad; who is a Senior IT for IBM, who agreed

to help me contact the partner. Since then Rad has moved the entire web site

from the boyfriends server to his server and is presently trying, as his time

from work permits, getting all of our web site transferred and copied to his web

site. Once this is done we will have it transferred in total to our own server.

The server will be free of charge since we are NPO. In the meantime we have been

making tons of changes to the web site and why you haven't seen any changes I

don't know but they have been made and they are continuing. I wish that everyone

knew what was involved in transferring an entire web site twice and especially a

web site as large as ours. It is over 100 pages.. So what have we been doing? On

the subject of members histories on the international web site: some people have

asked that their stories be removed, and have revoked the permission for them to

be used. We have been unable to do that because of the circumstances outlined

above; however, we will be able to soon.

What ground breaking things have we the Board done?

Well, I send out approximately 5000 Brochures per year to every Country in the

World. We now have Doctors referring patients to our web site. We are working on

a possible sponsor for the Foundation, but you don't see or hear about that

because we are not supposed to get hopes up in case they fall through. If this

sponsorship falls through I can hear it now: " Wow, the Board really screwed that

up didn't they? " We facilitate and donate time for Chat moderation; moderate the

Still's support group; send out gifts & cards; and make phone calls to members.

We maintain a crisis line and more. All of these things are done on a volunteer

basis. If you can't list one thing we did Marty you aren't reading enough, not

reading the right things, or your listening to the wrong people.

No one is going to ban you and the only way you can leave this list is if you

un-subscribe yourself, which I hope you don't. You add a lot to this group and I

understand your wanting answers, but before I give you answers I need to know

what you want. The same with ; the only way he can leave this group is if he

unsubscribed himself, which I hope he doesn't do. He has a hell of an idea. If I

was him I would have probably reacted the same way that he did until I sat down

and digested everything and " didn't read between the lines " ! Perhaps the letter

to wasn't worded the best but the foundation has taken accusations that

were a bit one sided without the chance to respond.

" ...to further this foundation in two ways one in increasing the knowledge about

stills in the medical world and the other in the memberships knowledge of what

is going on in the medical world on stills such as studies ,trials, research

ect. I am not talking about what has happened I mean as in what is coming up and

what is needed such as volunteers for studies, trials ect. so far the only time

I have seen any thing about these topics is when a member post on them not the

board passing information in a timely fashion. nor are any posted on the web

sigh but then too that is and has been so out of date that even the... "

Our recently returned nursing director, Kathleen Brown, posted on May 17, 2011

at 9:40 to the Yahoo Still's support group a current recruiting study to include

Still's patients and the National Institute of Health. She had been voted back

onto the Board of directors at that time and the support group had been

notified. Kathleen Brown has done numerous hours of research for her posts in

the short amount of time since her return just several months ago.

The foundation also has a European liaison working with us now on future

projects. The group was notified of several months ago but all new developments

such as putting together expanded conferences, if there are to be any

considering the lack of funding, take time.

Tom, Uncle Fuzzy, has done many, many posts about medical information that has

been very helpful to many over the years and posted informative articles at the

files section of the web site. We do have polls at the yahoo site and few to

none vote. We have added new features to the site like the mapping of members

who wish to add their contact information. We do have links and files pages that

others can use. We did design a new dragon logo on our programs that do get

distributed worldwide with foundation funding and so much more that is not

readily apparent without listing every single job we do!

Thanks for your input and let me know what you want and I will get it together

for you.

International Still's Disease Foundation, Inc. Board of Directors