foundation

October 26, 2002

i think the first step is draw up a charter of what it does.

education about enzymes, supplements and autism

donations for enzymes

sponsoring research

i think that this is the only way forward....i don't like unnecessary

work more than anyone else but it is the logical next step in the

maturation of this board and a need

> > > -Wow. That is really sad, Minna. So many people will listen

to

> > > that. Can't we start an enzymes and autism conference???

> >

> > This has been discussed on the board before, it's just a lot of

> work

> > as you would imagine, but not impossible. I would be willing to

> > organize something, but I'm not sure people would fly to the

middle

> > of the country to get the same info they can get here on the

board!

> >

> > also brought up this group starting a foundation of sorts

> for

> > distributing enzymes (and other supplements??), which I have

> thought

> > about quite a bit and did a little research on over a year ago,

but

> > again, it is a lot of work and I'm not sure if it would compete

> with

> > Angel's Purse? Although I don't hear much about it except little

> > bits here and there.

> >

> > Any thoughts on any of this welcome, I would be willing to do

> either

> > if I thought it could be pulled off and in a truly helpful way.

> >

October 26, 2002

Thank you Minna and ! You have great ideas!

I've two aquaintances here who have done this kind of thing whom I

contacted way back in the beginning who can direct me a bit on how to

get it started, but I was warned it would be a " huge undertaking "

with what I have to do to please the IRS. If others think it is a

good idea, I'm for trying it. I've no problem with the work if it is

needed and others can help. You are right that the goals have to be

worked out first.

How would one decide how to give money for enzymes and other

supplements? Just whatever the parent thinks they need? What if

they " need " something really off the wall? Would it be a no

questions asked kind of thing? I think that's how it would have to

be done (?). Strictly limited to enzymes? What if the type of

enzymes they want are obviously an ineffective product for autism

symptoms?

I agree with the educational idea - my initial idea was that it would

also be educational to help get the word out. If others would also

post on what they think the goals should be or not be so we can

figure out if this is feasible, that would be great. It has to be

based on what is needed.

I actually tried to get a rough idea of a website started last week,

a personal site that I was thinking could really become a start for a

foundation in time. My brother ran over a program that he said was

easy, ha ha, after 3 hours I had accomplished nothing. We'll see how

things go here in our discussion before I tackle that again.

Anyway, the more feedback the better on all this! You can email me

if you don't want to post it here. If you are new here and read

messages at the site, you can click on my email address above or send

to ckelley100 @ comcast.net.

It would be nice to talk it over here, though, too.

> >

> > This autism conference in Toronto drew 2000 people.

> > from 17 countries. With speakers such as Tony attwood, Sudhir

> Gupta,

> > Seroussi Carol Gray, Dr. Byrd M.I.N.D institute, Temple

> Grandin

> > (and her mother) Dr. Romanczyk (IBI specialist) and many more

that

> > cant recall right now.

> >

> > AM hoping that it would be possible to get a booth at their

> > conference. IT cannot be that hard!! even NONI juice was there!!

> > They do not even dedicate to autism in general.

> >

October 26, 2002

Hi

I think its a great idea and would be willing to help too - that US, Oz, UK,

Canada. I saw a web building programme that 'looked' real easy on QVC the

other day.......

Mandi in UK

> Thank you Minna and ! You have great ideas!

>

> I've two aquaintances here who have done this kind of thing whom I

> contacted way back in the beginning who can direct me a bit on how to

> get it started, but I was warned it would be a " huge undertaking "

> with what I have to do to please the IRS. If others think it is a

> good idea, I'm for trying it. I've no problem with the work if it is

> needed and others can help. You are right that the goals have to be

> worked out first.

>

> How would one decide how to give money for enzymes and other

> supplements? Just whatever the parent thinks they need? What if

> they " need " something really off the wall? Would it be a no

> questions asked kind of thing? I think that's how it would have to

> be done (?). Strictly limited to enzymes? What if the type of

> enzymes they want are obviously an ineffective product for autism

> symptoms?

>

> I agree with the educational idea - my initial idea was that it would

> also be educational to help get the word out. If others would also

> post on what they think the goals should be or not be so we can

> figure out if this is feasible, that would be great. It has to be

> based on what is needed.

>

> I actually tried to get a rough idea of a website started last week,

> a personal site that I was thinking could really become a start for a

> foundation in time. My brother ran over a program that he said was

> easy, ha ha, after 3 hours I had accomplished nothing. We'll see how

> things go here in our discussion before I tackle that again.

>

> Anyway, the more feedback the better on all this! You can email me

> if you don't want to post it here. If you are new here and read

> messages at the site, you can click on my email address above or send

> to ckelley100 @ comcast.net.

>

> It would be nice to talk it over here, though, too.

>

October 27, 2002

WOW!! You guys have really run with this idea since I was reading

Minna's post the other day. Count me in...I have no idea where to

start frankly, but I certainly agree there's a great need. There was

a boy with autism in my daughter's school (2 years older) and it

broke my heart seeing him have problems I felt could be helped with

supplements (this was pre enzymes.) I finally took in information

from Kirkman's hoping his aide would give it to his mother. They gave

me a " Thanks but no thanks " told me how they couldn't afford

supplements, etc. I know there are many, many kids out there like

this. Now that I've seen for myself what enzymes can do...and the

poeple out there determined to squash them...it seems so important to

help these children. Anyway, I have no money, but would certainly use

any freetime I have to help.

> > >

> > > This autism conference in Toronto drew 2000 people.

> > > from 17 countries. With speakers such as Tony attwood, Sudhir

> > Gupta,

> > > Seroussi Carol Gray, Dr. Byrd M.I.N.D institute, Temple

> > Grandin

> > > (and her mother) Dr. Romanczyk (IBI specialist) and many more

> that

> > > cant recall right now.

> > >

> > > AM hoping that it would be possible to get a booth at their

> > > conference. IT cannot be that hard!! even NONI juice was there!!

> > > They do not even dedicate to autism in general.

> > >

October 27, 2002

Incorporation is the first thing, set up your organization, write

your by-laws, apply to the IRS for non-profit status. This requires

filing IRS Form 1023, a particularly long form to prepare, but not a

great deal of difficulty. Go to the IRS website and download a Form

1023 and you will see how it works. Any good CPA could help with the

few technical questions that would have to be answered. It sometimes

takes two to three months to receive approval from the IRS. In

addition to a good Board of Directors, you need someone who can keep

financial records. Records need to be kept of all those who

contribute and the amounts contributed as well as how the funds are

disbursed. You would need to determine how you would disburse the

funds, amount of funding, criteria for applicants, etc. An annual

return Form 990 needs to be prepared each year that your income

exceeds $25,000.

These are just some of the points to be considered. It is doable,

just takes a little time, lots of interest and people willing to

serve in various capacities and belief in what you are doing. You

have a very large base with this group. Hope this is helpful. From

little acorns mighty oaks grow!

Devin's Mom

October 27, 2002

Excellent post Devins mom,

thank you for sharing your knowledge.

will save this info now for an outline.

this will work.

it will happen.

the vision is materializing.

minna

> Incorporation is the first thing, set up your organization, write

> your by-laws, apply to the IRS for non-profit status. This

requires

> filing IRS Form 1023, a particularly long form to prepare, but not

a

> great deal of difficulty. Go to the IRS website and download a

Form

> 1023 and you will see how it works. Any good CPA could help with

the

> few technical questions that would have to be answered. It

sometimes

> takes two to three months to receive approval from the IRS. In

> addition to a good Board of Directors, you need someone who can

keep

> financial records. Records need to be kept of all those who

> contribute and the amounts contributed as well as how the funds are

> disbursed. You would need to determine how you would disburse the

> funds, amount of funding, criteria for applicants, etc. An annual

> return Form 990 needs to be prepared each year that your income

> exceeds $25,000.

>

> These are just some of the points to be considered. It is doable,

> just takes a little time, lots of interest and people willing to

> serve in various capacities and belief in what you are doing. You

> have a very large base with this group. Hope this is helpful.

From

> little acorns mighty oaks grow!

> Devin's Mom

October 29, 2002

I don't know how much help I can be over here in Australia, but I am offering to

do whatever I can.

Belinda

April 28, 2009

There is one. It is called CARRA. Childhood Arthritis and

Rheumatology Research Alliance. Their website is

www.carragroup.org. 242 pediatric rheumatologists from the United

States and Canada have banded together to find the cause and the cure

for JRA and other rheumatic diseases. It is an awesome group. You

can click on " Current Studies " on their website and see the research

that is being done throughout the nation. (n, 20, systemic)

On Apr 28, 2009, at 7:02 PM, karen17058 wrote:

>

> I would like to start a non-profit that goes strictly towards

> research for a cure. I have had arthritis since I was five years

> old. That was 34yrs ago. I read these stories, and they remind me

> so much of what I went through in school, and as a child the

> treatments have really not changed much. My knees are in very bad

> shape, and I have had 6 surgeries two major, and now they dont

> dislocate, but the pain is still intense. I think the arthritis

> foundation is a good foundation, but they have never helped me. I

> just want private funds for a cure period all research. Does anyone

> think this is a good idea that they would support. I just read

> these stories and its my parents and me all over again breaks my

> heart. Best wishes and keep your hope.

>

April 29, 2009

Thanks for the info.

Re: Foundation