Recommendation for the aps charity ne... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,414 members•10,623 posts

Recommendation for the aps charity news letter

Hi i was just wondering how many of u guys have signed up for the aps charity news letter? If so how useful is it? Im in 2 minds as i would like to learn more about the condition and wondered if this would help.

Many thanks

Written by

gemgemz

To view profiles and participate in discussions please or .

The ability to reply to this post has been turned off.

11 Replies

•

MaryFAdministrator8 years ago

Hi, I recommend getting your information from here really, we don't know much about that charity anymore, we separated from them a long time ago now, I do like memberships, for instance I took out one for Thyroid UK, a very very hard working charity with few overheads, and I rate their news letter for my thyroid condition. So regarding your question it is a personal choice. I did used to have a membership with them but do not any longer. As I am very well informed on here, and also could only really afford to take out more than one membership at a time.

I also am not in favour of the name change.

MaryF

gemgemz• in reply toMaryF8 years ago

Thank u for your help! I think ill keep looking on here instead. Thanks for helping me make that decision ☺

gemgemz8 years ago

Ok thank u for your help! I think i wont sign up for it and will keep checking on here. Many thanks again for all your help ☺

Yllek8 years ago

I'm a paid up member of the charity and enjoy getting the newsletters. I like being a member and I'm involved in raising awareness and money for the walk they are promoting this year. I often refer to their website and print their factsheets so find £20 a small contribution for all the information I have used that they put together

On a day to day basis I come here for my questions and support though and get a lot of help factually and emotionally. so I feel I get the best of both worlds!

It's a personal choice for you but I find both sites good for different reasons x

• in reply toYllek8 years ago

I'm the same, the charity helped me with many issues I was having in the early days. They've been a great support

gemgemz• in reply toYllek8 years ago

Thank u so much for your help and giving me your view on it ☺

SueLovett8 years ago

I'm afraid I agree with AbFab it mostly consists of raising money pitches but what are they doing with the money? I also was very miffed by them calling it APS instead of Hughes Syndrome after all Prof. Hughes identified this illness and has worked tirelessly to improve our outcomes. I know others that I am in contact with feel the same.

SueLovett8 years ago

Yes & I think many patients were hurt on his behalf, it was totally ingenuous. Sadly I suspect previous support for the charity may not be so forthcoming because of this.

Fusch8 years ago

I joined the charity to get access to coaguchek machines which they have available to loan out.

bernieembleton8 years ago

That was the feeling I got. That is not supporting the patients. Hench I have not contributed.

bernieembleton8 years ago

It is very wrong what they have done to Prof Hughes. Has you know and I know what goes off behind closed doors. E,g patients been discharged from the Lupus clinic in 2013. It does not surprise me that they are taking the recognition of Prof Hughes off the Charity title. Therefore I will not contribute to it anymore. It's very hurtful what they have done to Prof Hughes. He deserves better.

The ability to reply to this post has been turned off.