Wegener's Granulomatosis: Charities, Support Groups and Raising Awareness (Episode 3)

[missm23]

If you haven't seen my posts before I am a young female, 23 to be precise, who has been living with WG since 2009.

Before I was diagnosed I was studying for a degree, I was diagnosed in October 2009 and was hospitalized as a result. I missed so much time off university I had to take a break for one year.

I am now approaching my graduation and have to produce a final year project. I am planning on creating a series of educational podcasts highlighting illnesses like this one. It is one that has a series lack of funding and public knowledge of the illness is minimal. (Did you know what it was before you got it?)

I have already released one episode exploring WG but in this episode, I want to look at how it's treated, it's different in so many people and so many people are prescribed different things.

This episode I want to use it to promote charities, support groups and events that raise awareness of WG. Obviously Vasculitis UK is on the top of my lists to include, so John & Susan, would you be up for contributing to this podcast?

I'd love to find out if there are any other charities, groups you guys use too.

Also, if there are any events raising money on behalf of charities this is also something I'd like to include!!

Many Thanks,

Aimee

[John_Mills Volunteer]

We would be delighted to help in anyway we can but it would be good if you could contact John by email. There is so much to say. John was in London on Wednesday, he was there by invitation as the patient representative for people with vasculitis, It was the inaugural meeting of The Vasculitis Rare Diseases Working Group..Discussing the response to the governments consultation paper on the strategy for rare diseases. It was really three meetings. One was to discuss the UKVAS registry of people with vasculitis, one was to discuss the strategy for improving the provision of care for people with vasculitis and the afternoon session was made up of case studies and current research studies. John will give a summary at the Yorkshire Support Group Meeting and the Vasculitis UK AGM.

John has had such an amazing day.. it was interesting and stimulating. John says it was very positive day for everyone with vasculitis. If you want to contact John by email he can talk to you in more detail. This meeting was just the first of many meetings.

[BeasT234 in reply to John_Mills]

Wegener’s disease

[e-mail]

[John_Mills Volunteer]

Vuk also have a fundraising page through Just Giving the link is below.

There are many fundraising events that do not go through just giving and are done with sponsorship forms instead.

If you look at the Zumberthon that Isabel is doing you will see that she has opened a just giving page so people who cannot make it to her Zumberthon can donate through her just giving page.

25% of the money raised in donations goes towards raising awareness..information leaflets newsletter etc. 75% goes on research. Over the last 6 years Vuk have funded over 137.000 pounds towards research both at Addenbrooks and Birmingham University hospital, to find better kinder treatments and also a cure. Vuk are launching the Route Map for Vasculitis this May at the AGM, Vuk have been working with Genetic Alliance for the past 18 months on the Route Map and the project was funded by the Dept of Health. Pat (the editor of the RM) and John will be going down to London to the official launch with Genetic Alliance and the Dept of Health in July. The Route Map will be available on the new website as a pdf document in May to coincide with Vasculitis Awareness month and the Vuk AGM. The Route Map is a 112 page document. If you would like a copy we can send you one. These are already going out to hospitals in the UK.

Do you receive the Vasculitis UK newsletter Aimee? There is a lot of information about diagnostic techniques for WG and other types of Vasculitis that may help you with your project. too. You may also find people in the newsletter you may want to interview for your podcast.

All the best

Susan

justgiving.com/VasculitisUK

[Dave_Buzzey_B]

Hi Missm, to answer your first no I didn't know and I went through two years of different test, pills, creams and a hell of a lot of pain, itching and anemia. Til I went to another doctor who was treating me for a breathing problem and then he stated he thought it was some kind of vasculitus and sent a report to my rhuematologists asking him to send me for vasculitus specific tests and it was found out through mainly blood tests and Skin Biopsy. Secondly I would be honoured to help you out with your pod cast.

Dave

[missm23]

EXCELLENT! Thank you so much!!!

I do receive the newsletter and all that info is fab thank you! I'll be emailing John asap.

Dave, this i great!!! Can you send me your email address please??? As I would love to interview you!

Aimee

[sherie]

hi, i am really intersted in running the jayne tomlison 10k for Wegeners Granulomatosis my father- in- law recently passed away due to complications of this disease. He was an increadable man who is missed terribly. My family have already registed to run the 10k but would love to do it in memory of steve and to raise awaeness. my problem is i cannot find a charity for wegeners so that can inform them and recieve a charity number please if anyone has information i would be very greatfull. thanks sherie x

[John_Mills Volunteer in reply to sherie]

Hi Sherie, I'm John Mills, chairman of Vasculitis UK. We support people with all types of vasculitis, not just WG, although about two thirds do have WG. It is a fine distinction because, for example, some people have a type of vasculitis called Microscopic Polyangitis, which can be very difficult to distiguish from WG. Vasculitis UK is run entirely by people with vasculitis for people with vasculitis. We have no paid staff and no offices, so our running costs are very low, mainly printing and postage. All our excess income (typically 75%) goes into funding research into finding better techniques for diagnosis, better treatment and into the underlying causes of vasculitis.

Vasculitis UK is a registered charity and it has been in existence for 20 years (formerly as the Stuart Strange Vasculitis Trust). Our core activity is providing information and advice for people with vasculitis, on the basis that the informed patient is empowered to have control of their illness. We also supply advice on other topics such as claiming benefits - very important for people who are stricken by a disabling disease.

At an official level, Vasculitis UK is regarded as the Voice of vasculitis patients in the UK, so we are the patient group represented on various

bodies and committees. At present I am preparing a report on Vasculitis Patient Care for the Department of Health's consultation on the Strategy for Rare Diseases.

So if you do choose to run for Vasculitis UK in memory of your much-missed father in law we would be greatly appreciative and you can rest assured that the money would be wisely spent.

If you send us a private message with your postal address, we can send you a copy of our latest magazine, so you can getter a broader idea of what we do. We can also offer advice and some help with setting up your sponsoship - if you want it.

[hamble99b Volunteer in reply to John_Mills]

I need help and advice John