Researcher to study mysterious diseases.....

[Kimbangu]

Anyone ever heard of this gentleman before.... Monsieur Pagnoux? - This certainly sounds like good news.....

TheRecord.com - Local - Researcher to study mysterious diseases (http://news.therecord.com/News/Local/article/737811)

[andrew]

Certainly seems like good news but it two years going to be anywhere near enough?

[Kimbangu]

Just trying to be upbeat, (although I did consider putting the word "sounds" in italics).... It's never enough. I suppose I'm just excited because it is the first mention I have seen of research..... since I suddenly got so interested in this particular subject!

[Sangye]

There's actually a surprising amount of research being done on Vasculitis, and Wegs in particular. Nothing compared to more common diseases, and not nearly enough.

The US National Institute of Health (NIH) has a website that posts all research studies-- active, recruiting or closed. Very interesting to see what's been studied and how it went. For active studies, you can see if you meet the qualifications to be recruited.
Search of: wegener's granulomatosis - List Results - ClinicalTrials.gov (http://clinicaltrials.gov/ct2/results?term=wegener%27s+granulomatosis)

Also, if you want to look up research articles, go to PubMed (the US National Library of Medicine). You can enter "Wegener's Granulomatosis" and find thousands of articles that mention WG. Hone your search by adding the name of a drug or condition. It contains research done all over the world.
PubMed home (http://www.ncbi.nlm.nih.gov/pubmed)

One thing I learned from the article you posted Kimbangu is that there's a VF of Canada! I didn't know it existed and never heard it mentioned in this group. Here's their link:
Welcome to the Vasculitis Foundation Home Page (http://www.vasculitis.ca/)

[JanW]

Yep, if you have to have vasculitis, WG is a good one to have. It seems to be one of the less 'rare of the rare.'

My ENT, who is a researcher and therefore is self-interested here as well, thinks that all WGs who are healthy enough should be actively advocating with their governments (to the extent that your government funds disease research, which I have to imagine almost all do) do provide more funding for WG. I mentioned to him that I would see him at the Long Beach conference and he got all over my case about signing up on the website and agreeing to be an advocate. As he said, "the pie is all there, it just depends on how it get sliced." He knows that what he brings to the table as far as being a clinician is nothing compared to the raw emotionalism of 'victims' of the disease. Think of breast cancer, as a great example of how patient advocates can really move the ball forward.

I did sign up to be an advocate and almost immediately got a call inviting me to a special leadership conference that will immediately precede the conference. I'll let you guys know what I learn.

[Sangye]

That's awesome, Jan. What does it mean to sign up as an advocate?

[Col 23]

Sounds interesting Jan keep us posted.
Col 23

[JanW]

They have a bug on the website where you can sign up and tell them what you would like to do (everything from web campaigns to visiting your congresspeople in DC). It looks like there is something for everyone's level of commitment. Lebovics had an advocate who held monthly meetings for WGs patients in his office for years until she got married, had kids and moved to CT...which in and of itself is a success story when you think about it.

I love doing this kind of work and being a help to people, so I'm happy to do it.

[elephant]

That is Great Jan!

[Sangye]

How wonderful. I can't wait to get stronger so I can do something like that.

[JanW]

There are certainly things that you can do if you are housebound or mostly housebound like web campaigns or write letters.

They haven't asked me to do anything yet, when they do I'll let you know the nature of the work.

[germaine]

Mount Sinai Hospital in Toronto is doing some research into possible genetic influences on WG. I signed up last year, but we don't really hear anything. The researcher was having problems finding enough people I guess.

[jola57]

Dr. Siminowich is doing the study and as I believe it it will be some time before any findings are published. Individually we will not be given any info and just have to wait until it is in a journal.