I just re-read the blog post I wrote almost a year ago, entitled “An amazing 48 hours“. And then I added a comment of my own to those of others ….
It’s 10th October 2011 and I am in my hometown of London. I just referred to this blog post in a reply to a new member of my VW4Causes facebook group who’d asked for some information about my reasons for doing this work and driving across the USA.
It’s actually very heartwarming for me to read what I wrote almost a year ago and to recount how I felt then. I didn’t know what lay head. And neither did I know that rather than 5500 miles and 5 months, I’d drive 7853 miles over 7 months!!!
Now I can’t believe that I’m contemplating doing more driving for MG awareness. Maybe I’ll stay a little while longer here in Great Britain to reflect on the most productive parts of the trip and see if this time I can get some corporate sponsors to partner with vw4causes and engage the media more so that our message can be spread even further afield.
At the same time I am also mindful of how a few days ago I felt very sad to read a post from a lady with MG (and three other auto-immune diseases) with whom I had been attempting to plan an MG Awareness event in Georgia, USA. Debbie, whom I met last December and is one of the most courageous, determined people I know, wrote how awful she felt when she was met by a lack of enthusiasm from others. She has had to shelve the event to next year and in the meantime her health has suffered a set back. She told me “If I had cancer instead of MG, it would be a whole other story”.
I know exactly what she meant. By now I’d be planning how to get my VW bus to Georgia to support Debbie in her efforts. Instead we are wondering what we can do to make a Spring event a success.
October in the USA is Breast Cancer month, and now I am here in London, I can tell you it is the same here, too; at least my local Wal-Mart owned Asda store is filled with pink ribbons. How I would love autoimmune diseases to have that kind of support. I keep imagining that one day the Susan G. Komen Foundation or another cancer charity will give some of their money to charities that support women with illnesses that are autoimmune in nature (75% of all cases occur in women – source AARDA).
Please do not take my comparison with cancer as me saying I do not feel compassion for those with cancer; I do care very much. Yet as an ex Pharmaceutical executive and biologist, I know that the research efforts for a cure for breast cancer (and most other cancers) will carry on regardless of whether anyone raises another penny or not. What concerns me more is that autoimmune diseases are a whole other picture.
Why is it, when we know that more people now have autoimmune diseases than all the cancers, that these diseases are still largely ignored and when it comes to funding for research or support for charities that support patients, the amount of money donated is insanely small compared with the amounts given to cancer causes.
I have always hated inequality in any sphere of life, and this level of inequality makes me very angry.
Please tell me what will it take to change this picture and make people start to support these lesser known causes that account for far more people.
If the figures don’t count, what will?