spf newsletter and web site.

[olly]

it just came to me yesterday that we dont have the spf site on the pls forum.
this is a very good source of info on hsp/pls plus there are regular updates and 3 yearly news synapse to download or print.

http://www.sp-foundation.org/

they provide great advice from living with pls to caregiving,any news updates plus fundraising events accross the usa.
i did have the uk spf site but lost it,will try and get hold of it for us brits.

hoping,maybe you could make it a sticky please.

[hopingforcure]

good idea Olly.. Thanks so much..

[Just J]

Olly thanks. I've been all over the internet a few yrs back frantic for any kind of info and forgot about the spf site because I had found this forum! This forum has been so helpful that I forgot to reach out to other sites for new, updated information. Thanks again.

[olly]

you are both very welcome
hoping........could you please make it a sticky,i can not find how to do it.

the spf site is the only place you can get the latest medical updates on pls and other info.
i did get to read a bit of the summer synapse,they have identified a pls gene and some more hsp ones.
theres also stories and poems from fellow pls'ers.

if its a sticky then people can readily get access to it and the latest news.
thankyou

[Al]

OK Olly, seeing as you asked so nice, I'll stick you.

AL.

[olly]

ooohhh i say,i've never been stuck up before
thankyou so much al
its good to see your post,i hope you are as well as you can be.
thanks again.

[hopingforcure]

Olly,
did not have the ability to STICK that post..But now you have been Stuck by the big guy. LOL

[Zaphoon]

Caroline,

That was very thoughtful of you!

Someday, I'll have to find my way back to the U.K. for tea and crumpets and a visit to Olly's!

PZ

[olly]

i must add if theres an article you want to save in one of the three yearly synapse then download it/save it to favourites or print it off.
on the spf home page index there is a tab "international" which will give the addresses of the organization in other countrys.

zaphoon...........you are welcome for tea and crumpets anytime

[Geo]

I will add that there are more than 500 PLSers in the US. I have read somewhere in the Neighborhood of 2000 and up . Figures dont mean much though until it reaches epidemic proportions. Then there will be a report at CDC ,like West Nile Virus has to be reported . But heres another catch ,the Doctor has to say yes, you have West Nile .

[Zaphoon]

Geo,

The doc is probably going to wait 3 or so years before giving a hard diagnosis of PLS.

How long does it usually take for West Nile to be diagnosed? Anybody know?

PZ

[Geo]

West Nile is done using a Western Blot Test usually within a month or two ,But once the Virus has Mutated hard to tell it from other cells ,this is why they wont tell us yes it could be a Virus . BUT even if it showed up, how do you treat it ? If you research enough you'll find out most Neurological diseases have no cure . And its 5 yrs. i was told . Geo

[Zaphoon]

5 years is a long time!

PZ

[Geo]

Your funny Bud , Would you have said that 10 - 15 -20 yrs ago . Now you say that , in the back of your mind, you want to live to 90 something, but you know thats way on the outside of our realm now . But knowing what we know now , we are happy with anything we get LOL . everyday i get is just fine with me . We now have become more thankful for all we get . So im thinking Thansgiving Day should be a special day every year for us . Im finding every year my speech is weaker and i cant form words when im talking to friends . I use to have bad and good days but continually getting worse . Have a Nice Thanksgiving this year to All . Your Friend Geo

[olly]

hello everyone.
as soon as the autumn/winter snapse comes out i will post it.

i did find this article,thought it would be good for you folks in the good old usa

Magnificent Mile organization partners with Articulon for marketing :: Editor?s Blog at Local Tech Wire