Hey, we have a spokesperson here!!!!!
 

http://abclocal.go.com/kgo/story?sec...t_7&id=5401293

It is a local person here in the San Francisco Bay area, but at least word is starting to get out.... I haven't read it all yet, I was so excited to see the announcement I had to get the link on here.

Actually, someone at work told me about it and I went to the page to check it out. I'm really busy but just went there and book marked it.
I'll read it later tonight, but want the rest of you to check it out too.

Terri

Here is his foundation he started...
 

That is good news. Local stuff goes national and even global...hooray.

Here's hoping!!
 

I hope he spreads this in every way possible. Thank you for posting it. By doing so, you have helped him spread it. Send it to your local newspapers, that will also help spread it. And I hope he continues to have the strength to spread his word.

Billye

I am extremely impressed. And if I lived there, I'd be there in a heartbeat.

What a terrific young man!!!! I do wish him well.

Melody

Most excellent news
 

I just visited the website and it seems to be quite good. I'll certainly forward the info on locally - maybe a grass roots like movement will get the kind of attention we all need and hope for.
Many thanks
Alkymst

Terri,

Hi, neighbor. Sonoma County here.

rose

Grass Roots
 

I 've always liked that,and i'm glad you said it A,and i'm glad you
found this Terri. Thanks again,:) :) Sue

What a wonderfull find Terri, i sent them an email making them aware of this terrific Forum.

I'm posting elsewhere
 

I'll post it on to the Sjogren's forum too. There are a lot of letterwriters there I bet. Thanks again.

Billye

Great news! This will be wonderful... When I tell most people I have neuropathy, they look at me like I have 2 heads. Hopefully, this will educate those who have never heard of this!

Cathie

This IS an org I am going to contribute to...
 

Because: IT puts it out up front!
I have been reluctant to give to the 'Neuropathy Foundation' just for this reason! You have to be a member to get more than 5-10 year old information. I do not mean to 'dis' the NF, but repeated requests to them to update or more clearly DEFINE their mission has responded to dear ears...or volunteers Up until recently, their info re IVIG was at least 7 years out of date...It has been recently remedied.

This particular advocacy organization is NOT a local one. It just happens to be 'housed' in CA. If you look at the board and advisory committees...it has great national depth and breadth.

HEY WE ARE THE PRIMARY ADVOCATES! We have to alert those locals...city councilpersons, state sen's and reps...some of them ultimately become National Sens/Reps and beyond...Educating at the local level, reminding them that WE ARE HERE, WE THINK and do other useful things - well..We educate, clue them into all the complex issues for the future! BUT we got our 'dib's in early! Then it's a matter of constantly reminding them' They see you with the FACE [PAIN but SMILING?] and the cane...that's in their mind from the GET GO!
WE ARE THE STARS! AND WE CAN AND WILL Get the publicity! Start Small, get large. - j