How holding a fundraising event for Vasculitis UK with a few friends from our own home helped raise awareness locally.

[John_Mills]

Just something I wanted to share. John and I decided to have a fund raising lunch at the end of February for Rare Disease Awareness Day. We had never done anything like this before in our village. John made homemade onion soup. We just invited a few friends at short notice and until recently not many people in the village knew that John has Wegeners Granulomatosis and is chairman of Vuk.. We were astounded to find out that one of our friend's sister has Churg Strauss Syndrome and this lady took some information leaflets etc to share with her family. Some people made things to sell like cakes, marmalade and biscuits. We had a raffle and a little bit of a bring and buy, sat and chatted. We raised £290 for Vuk. We put a a little thank you note in the village magazine this month to thank everyone. Yesterday I received a telephone call from a lady, who I did not know well, but who has lived in the village some years, to say she had read the village mag and wanted to donate £10 to our fundraising event, to make it up to £300. I popped to see her yesterday to collect the £10 and to say thank you. I was there about an hour. Her husband died from Vasculitis in 2009, she told me the whole story. He had been ill for a few months and his health had deteriorated quite quickly, but the doctors only diagnosed Vasculitis about a week before he died. To this day she does not understand what Vasculitis is or why her husband died so quickly and so unexpectantly. It made me feel so sad, I left her the Vasculitis UK Autumn newsletter to read and I will visit her again in a few days. It was the first time she had spoken in depth about it to anyone and it was still painful for to do so now. It just shows you what a small world we sometimes live in and maybe sharing information with the ones we live close to is just as important as trying to raise awareness from one end of the country to the other.