Does Hughes Syndrome Foundation have a Corp. Sponsor anywhere in the world

[Skyllark]

it came to my attention that I have never heard of a Major Corp. Sponsoring Hughes Syndrom... or is there and I have not heard of them yet... someone that consistantly give $ towards research towards APS or CAPS?

[Gadgets]

Not that Iam aware of, There was some talk of a major celebrity going to help to promte APS awareness but not heard anymore. This is not easy to acheive unless you have good contacts.

[Hidden]

No - we don't have anyone The only corporate support we have ever had is through PRUPIM because a patient suggested us as one of their charity's of the year (2008) and gave us £1K throughout the year.

We get support in the form of £200 from Roche Diagnostics for our Patients' Day and £1K from Sanofi Aventis. (Roche doesn't have the same funding as the pharmaceutical companies, hence the tiny amount). I have managed to blag £2K from Sanofi this year as I insisted that Plaquenil was going to be the new wonder drug for APS (They manufacture Clexane in the UK as well).

Through one of my trustees I am able to apply for a grant this year for the Patients' Day to GSK - if we get this funding we will then be able to have a recording made of the day and a transcript. No funding = no transcript.

Unlike lupus or thyroid, Hughes syndrome doesn't attract the pharmas simply because the drugs used so far are generic and cheap - with the exception of Clexane and possibly now Plaquenil. Maybe the new anticoagulants in the future but watch this space.

As Gadgets says corporate sponsorship is usually made through contacts - if anyone works for a large corporate and wants to put the HSF forward as their charity of the year please feel free We can always make a pitch ...

[paddyandlin]

It's a start and way forward Kate have some ideas will email paddy

[Skyllark]

Was talking to a friend that works at a Starbucks, from what he told me the locations look each year for organizations to support, My wife and I are regulars at one here, was told to put forward a praposal and you never know what could happen!

[Hidden]

Please do put us forward and anyone else reading this It's usually through personal contacts/proposals that corporate sponsorship is gained for small charities.

The large ones don't have the same problems - I heard an interesting statistic on Just Giving recently - nine out of ten donations made on their website go to just ten of the large charities! Considering there are 160,000 charities in the UK, it gives you some idea of what we're up against. Mind you about 4000 small charities are forced to close every year and you can see why.

[Storky]

Kate do you use Just Giving? Its just that its quite an expensive option for Charities. Our Treasurer has found a cheaper option which I can give you details on if you would like.

[Hidden]

Yes, we do use Just Giving - justgiving.com/hughessyndro... - it's the most recognised site and isn't that expensive really. The fact that the Gift Aid is collected at source means a lot of work is done for us, but I'm happy to have a look at other options.