Vasculitis Foundation

[drz]

How many viewers belong to the Vasculitis foundation?

Anyone have any thing planned to promote Vasculitis Awareness Month May1-May31, 2011?

Has anyone given any presentation to medical groups or service clubs to increase awareness of vasculitis?

[drz]

Anyone going to Regional meetings in Canada in March, Boston in March or North Carolina in May?

[NicShaf]

I belong to the Vasculitis foundation. I was planning on sending some information to some of the local papers in Southern California with information and maybe my story thus far...I haven't started yet though, so I'm not sure where it's going to take me.
Vasculitis Awareness Month snuck up on me this year, next year I would like to be more involved, maybe get a local 5K walk together or something for the month of May...

[Psyborg]

I just joined last week myself. Not sure what to do to increase awareness though :)

[ArlaMo]

How do I join? I'm from a pretty small town - so I bet I could get something in the paper. Hubby does a monthly article for ortho so he has contacts :biggrin1:

[NicShaf]

You can join via their website www.vasculitisfoundation.org (http://www.vasculitisfoundation.org)
It is $35 to join. They send out bi-monthly news letters, and have local chapters all over the country. They also have some merchandise for purchase, I bought quite a few rubber "vasculitis foundation" bracelets for my family to wear to raise awareness and support a good cause.

[Sangye]

The VF also sponsors some of the Wegs research done by the major centers.

[Daggar]

We just joined the VF Canada and VF International groups... awaiting confirmation...

The VF Canada functions seem to be based in eastern Canada -- i'm not sure if there's more representation in the west?

Also convinced the family to sign up for a Wegener's Granulomatosis Genetic Study they're conducting out of Toronto, Canada. A bit of research on our part for family illnesses on both sides and a bit of blood from each participant.... hopefully they can find more out on the "genetic" factors.

[drz]

I just joined last week myself. Not sure what to do to increase awareness though :)

Did you put your local doctor on their mailing list? It is one way to help them become more aware of Vasculitis and might even improve your care. My local internist thanked me for their news letter?

[Psyborg]

Hmm...I might have to put my regular Doctor on the list. She'd probably enjoy the information.