Re: As a member of this support group

[Guest guest]

I have also been here a long time and I have see this foundation when it was

newer and more active with getting information out to members and asking members

for there input. I was here when the web sight was kept up to date and when the

board members would tell us about new research and studies that were going on or

about to and so much more. I remember when the members were ask were a

convention should be held then should it be every year or not and then asked to

vote on Vegas or moving it around and so on. All things I have seen slowly

disappear to were now the members are not asked any thing at all but told and so

on.the point being the members had a say and voted but not any more!

 

Do I enjoy bringing this up O hell No! do I feel it is needed YES! and I have

stated just a few of the reasons why. now if and others want to attack me

then go for it as I can take it and I could give a lot better then I have

recived so far. I will not as my goal is about the Foundation not a personal

vendetta. I will say I have had a lot of experiences in life and all were things

that have helped me in life help others from working with the disabled to

working with the laws on disability to getting laws passed that helped people

such as if you live in a Mobil home in Calif. Were they have a law based off a

ordinance I helped get wrote and enforced that protected low income people. So

because of the laws I work on people Like receive benefits from them so do

not belittle the things I have done in life. When you do it only shows how

little you know or understand and yet how fast you are to judge people. Now

that, that is cleared up and in the

open I could post a lot of emails I have recived and other facts that would

harm some people but I will not for the simple reson it is not about me nore the

personal attacks I hae gotten not just now but even in the past by some of the

same people. It is all about this foudation and the membershipo and Stills and

how to make the best of what we have and how to make it better. now any one who

thinks there is not room to inprove or that mistakes have not been made is nly

fooling them selfs!   

 

I have never came here and wined because some one did not agree with my post but

I have come here and vented just like many others.I hace been critisied for many

post that were not agreed with and I posted back with facts on why I posted as I

did but with out getting upset.

 

Now to try and say that I or others do not care about others or this foundation

is childish and nothing but trying to be hurtful and lashing out in anger filled

emotions but definitely not thinking with a clear adult mind set. selfish is

being labeled on me and others when the fact of the matter is the very reveres.

if I and others did not care then I / we would not say a dam word but just let

it keep going on as it has been and let the foundation keep changing from its

mission statement and staying on its current path instead of trying to point out

things and help it get back on track. Now if some can not take criticism I can

not help that but being a board member puts one in the seat of being both the

receiver of pats on the back and also criticism all dependent on there actions

singly and as a group!

 

I also am sad that you feel starting a new sight is a good thing for this

foundation or people with stills instead of answering and or fixing the problems

that have been pointed out. Doing so would do nothing but weaken the sight and

lead to damage and unrepairable things and the fighting for the same donations

and members so tell me is that really what you want? Because you have no idea if

it can be done or not nor do you know what or if there is backing already in

place if it became needed. Again said out of anger and not in the best interest

of the foundation or the membership here!

 

I have also noticed that there has been not one single fact posted to the

questions at all but in stead personal attacks and silence. the fact still

stands there are questions that need to be answered and not just for my self but

for all.

 

As I have said from the start and many times over it is not about me or any one

single person it is about bettering the foundation and getting things back on

the right track.

 

now some may not see that for what ever reasons but the Foundation and this

sight used to be responsive to the membership and faithful to the mission. the

foundation has slipped from the track and needs to get back on track that’s

all.  it is way better to do it now when its savable then after the thing has

full derailed and wrecked. that is all any of this is for. stay to the mission

stament . get the info out there to both the membership and the medical world

and help both work with each other in all ways possible and last but not lest as

all are equally important keep the web sight up to date so that new people and

or medical people who come here who read that as there first impression are not

given old info and out dated ideas but current helpful and happing now info!

after all it is a lot of times the first thing many see that is not full out

medical terminology or based

The  Redneck  

Marty G     

 

In life there are few greater joys then the freedom of free will given to us By

God, the ability to love, the freedom to chose our friends, and the freedoms we

have been given and guaranteed by our founding fathers. Now if congress and the

President would just let us enjoy them instead of trying to interfere because of

there fear of them.

Marty G

5/11/2011

To learn more about Stills Disease or to make a tax deductible donation:

 http://www.stillsdisease.org/stills_info

 

To: stillsdisease

Sent: Saturday, June 4, 2011 9:37 AM

Subject: As a member of this support group

 

here as a MEMBER of this SUPPORT group I feel very sick and sad this week.

I joined this group in 2001 and when I joined there was another member sending

out his supposed 'cures' to members privately and to the group. There was much

conflict about it and I thought I really don't need it and wasn't sure at all if

I wanted to stay. I imagine this looks the same to others right now.

Cat brought the situation under control and I held the utmost respect for her

ability to take care of the situation and make sure this disruption didn't go

on.

I am so saddened that last night I felt the need to ask my long standing sisters

and brothers to do the same for me.

You see, I am alone right now, sicker with this as are all of us and so

desperately need to be able to come home to my family for the support,

understanding and love I've always found here. I don't need to be told that I

whine and use my position as moderator unwisely or unfairly. I've always signed

my posts as myself when I post or as moderator when I'm asking others to mind

the rules.

Well today I'm melt. That's the name my sister here gave me. Just as some

of theirs I gave them. I've cried this morning and yesterday and the day before

because I'm hurting, up all hours and sad for my friends and what it's doing to

them as well. I like Cyn's post and what it says. Personally I feel the same. If

someone doesn't like us, then go start your own group and leave ours alone!!!

YOU go do the work and believe me you have to be more than a politician, bus

driver, printer/publisher to do it! You have to care about others before

yourself.

I hope I will always have this home to come to.

melt