APS quarterly newsletters

[sbncmo]

I had related my husband's history with APS on the "old" forum last year & was told that it would probably be printed in an upcoming quarterly newsletter. I don't know if I missed the newsletter or if it didn't get printed yet. Is there any way I can read previous newsletters?

[paddyandlin]

Hi Sbncmo,

Was this a Newsletter for HUghes Syndrome Foundation? Are you a member?

I will speak to kate if you email me you personal name etc i will see if we can find out if it was used or if it was put into the log of case studies the HSF hold to use as articles come up.

Thanks

paddy

[sbncmo]

Hi Paddy. No, it was on the old site, the APLSUK site. When I went back & read the message that they would try to get it into a newsletter, I realized it wasn't that long ago, less than a year. But if it was transferred here, as I understand posts were going to be, it might still be put in a newsletter. (I could be mistaken about posts being transferred. I know several people from the APLSUK site were angry that it was going to be done. I wouldn't know where to look for it, if it was.) Were posts from APSLUK transferred here?

I'm not signed up for a newsletter here & would like to be, so I will get signed up for that.

Thanks,

Shelia

[paddyandlin]

Hi Shelia,

I cannot find the post you are talking about can you give me a link to it please?

I do I just want to clarify that the APLSUK site and the HealthUnlocked Hughes Syndrome Foundation site do not and never have sent out newsletters.

You do get a Newsletter 1/4 from the Hughes Syndrome Foundation Charity when you sign up to the member, i am thinking that might be what you maybe thinking and as for you husbands case study i will see if Kate at HSF has any idea on this (she is away for a few days ) If you can send me a link to the message you are on about and your details but as far as i am aware i have no idea, so as soon as i speak to kate i will let you know.

Regarding the transfering of posts and people being angry. During the transition of moving members to this group, members were informed a number of times that we would over the next few years we would transfer the last years maybe two years APLSUK messages, at this point we have not done any transfers of personal messages to this site. You will know when messages are transfered as they will have a APLSUK title.

Regarding people being angry i am very suprised as we sent a few messages to people telling them on the group that if they did not want there messages transfered they were to contact me and let me know. If people are upset over this it will be down to them not communicating with us and i would suggest if they feel that angry over this they need to email me directly and i will ensure that none of there messages are transfered over as other members have done and are doing.

The APLSUK site will finished public use on the 6th Feb 2012 some members have stayed but 95% have transfered over to the APLSUK new home where they can get the same support, information and now access to more research and better resources.

I hope this clears things up.

Thanks

Paddy

[sbncmo]

Hi Paddy.

I called the the quarterly's from APLSUK a newsletter because it would come to my email as The Summer / Fall 2011 volume of our quarterly newsletter,

"Antiphospho...What?", or whatever quarter it was covering. The story I had told was Message #59817 in APLSUK website, but it only tells half of my husband's history. It would be good if I could tell the entire story in case there is an interest in putting it in the Hughes Syndrome Foundation newsletter. What would be the best way to do that?

Yes, I was surprised to read that several didn't want their posts transferred here. It makes a loss for all of us. Perhaps those people already contacted you, but I still feel it is a loss for everyone dealing with this.

Thanks for taking all this time to help me with this. I hate being a nuisance & having you search all over while not really knowing what to look for to help me.

Thanks again.

Shelia

[paddyandlin]

Sheila,

You are not a nuisance at all.

The news letter your are talking about was not from APLSUK they were a newsletter put up by the apsfa which is the aps foundation of america if you search on Google for that you will get it I would put it up but answering through my mobile i hope one of the other admin will put link up for me we nolonger have much dealing with this charity any more

Regarding doing a case study for HSF I think that would be great I will speak to Kate at hsf and get forms sent to you email me you contact details

Paddy

[sbncmo]

Thanks, Paddy. I understand about the newsletter being from a different foundation now. It gets confusing working with so many organizations. I assume a case study for HSF would also include cases of APS.

(I don't mean to sound dumb. I've had all my life epilepsy & I have trouble understanding things. Even my husband, who has the APS, gets frustrated because he has to explain things to me a number of times. Sorry.)

Thanks for your patience.

Shelia

[paddyandlin]

Hi Shelia,

I am sorry for the delay in response i have been away for a week the newsletter would of been for this organisation apsfa.org/ i will send your details to Kate at HSF as well to send you a case study form.

Shelia never say sorry for who you are at the end of the day we all have our issues and we will find ways round it

Paddy

[sbncmo]

Thanks Paddy. I appreciate all the work you are doing for me in tracking this down.

I'll try not to say "sorry" anymore. I grew up with no self-esteem & while I've made a lot of progress, that guilt & low self-esteem creep in somethimes. But like you said, we all have issues & learn to work around them. Thanks again for all your help.

Shelia