Charity Start Up

endogirl

Hi All,
Very much in need of advice before embarking on this... Will try to be as clear as possible and not ramble

I suffer from a condition called Endometriosis (Endo for short). It's a very common condition, incurable but treatable sometimes. Basically it has made my life hell for over fifteen years. I have been getting so frustrated recently about the lack of understanding about such a common condition, and how long it took for my to get a diagnosis. No one knows about it, despite how common it actually is.
Also, this disease has cost me thousands of pounds. I had to resit a year of uni, I have had months off sick from work, endless hospital appointments, operations, prescription costs etc.

There ARE charities for this, however I find that they all fund research, and don't seem to do very much in the way of awareness, and absolutely nothing in the way of financial help for those suffering. Luckily for me, I am in an ok financial position now, but throughout the years I have been off work on only SSP and very much struggled to survive.

I am so very passionate about this, and feel that I have so much knowledge and understanding of the condition that I could really make an impact myself. I want to start my own charity. The aims would be-

Awareness, especially for teens. Most people are considered too young to have endo until they are in their thirties or forties. This is wrong, I like many others had it from the age of twelve, but I knew nothing about it and didn't know where to turn. I didn't know what was normal and what wasn't. I want to go to schools and talk to young girls, educate them, something that would have very much helped me.
I want more information available in doctor's surgeries. I have only ever seen one vague poster up for endo, and it didn't stay up long. This isn't good enough, there should be leaflets, posters, information.
And what I'm really passionate about is some kind of financial support for those who are in a bad situation because of their endo (e.g. living on stat sick pay). From my experience talking to other women in the hospital, the DWP/ATOS don't understand Endo at all, and many have a long hard struggle to be awarded PIP or even ESA, and so leaving many in desperate situations.

I don't have it all thought out yet, there is a hell of a lot of research I need to do first. I have a lot of ideas for fundraising.

However, before I start really planning I need some advice on how to go.
I want to do this full time, I'm so passionate about it, I want to be able to give it my everything. If this got off the ground, am I able to pay myself a modest salary from a charity? Unfortunately I do need money to live... so that's an issue. Obviously I would be doing it in my own time for quite a while whilst still working, until I found out if I could get this going properly, but if it came to that, is that possible?
I have read that I need trustees, where do I find them, and does this mean I am basically handing all the decisions over to them? Can I be one? This is my baby and I want to be as involved as possible.

Is a "Not for profit" the more appropriate way to go? I know little about this but have seen it mentioned online

Any help much appreciated as I know very little so far, and the internet has just been one big mine field trying to get these direct questions answered
Many thanks
Endogirl

pramsay13

There are a whole lot of questions in there, some could fill a thread on their own.
I'll try and answer a few.
A charity is run by trustees. If you set up as a charity you will need to decide whether you want to be a trustee (you could even be chairman) or an employee. You can't be both (although as a trustee you can be paid for certain things).
If you have trustees and you are hired as an employee the trustees will have ultimate power (and could fire you).
From what you are saying you are probably better going down the route of sole trader or limited company. There is nothing stopping you being 'not-for-profit' although people might not take you as seriously if you are not a registered charity, because even if you say you are not-for-profit you could just be hoarding millions and there is no comeback for those that have hired you or donated.

martindow

There seem to be a lot of threads recently from people wanting to start new charities. OP I'm quite surprised you feel that existing charities don't provide information or help awareness. These people, for instance,

http://www.endometriosis-uk.org/

have quite a lot of information and advice.

If you think it is lacking, maybe you could suggest improvements and get involved with them or one of the other charities that is already set up. Starting up something new that potentially duplicates existing resources seems to be a lot of work that may have little effect.

SailorSam

I don't use Facebook myself but can't that be used to get people involved in 'pet' subjects. Or maybe if you got in touch with your local radio and you could get them to interview you and broadcast your story.

Savvy_Sue

martindow wrote: »

There seem to be a lot of threads recently from people wanting to start new charities. OP I'm quite surprised you feel that existing charities don't provide information or help awareness. These people, for instance,

http://www.endometriosis-uk.org/

have quite a lot of information and advice.

If you think it is lacking, maybe you could suggest improvements and get involved with them or one of the other charities that is already set up. Starting up something new that potentially duplicates existing resources seems to be a lot of work that may have little effect.

I'd have to back this: starting a new charity is definitely not for the faint-hearted, and the charity commission doesn't encourage duplication.

Only the other day I heard an interview on the radio from someone famous who's suffered / suffering from it. And they weren't asking for money for research.

Plus if you start a charity to inform and educate, and then stumble across an interesting new line in research - what are you going to do?

Advocate within one of the existing charities to get speakers into schools etc, you'd need a national organisation to get the message out as far as it needs to go.