Is it just me, or did World Parkinson’s Day yesterday go with a whimper rather than a bang?
If you knew where to look there were campaigns, meetings etc and last year my family raised £6000 in an overnight tennisathon, but in terms of educating and raising awareness of the general public I was aware of two short slots on daytime tv, which is disappointing.
Perhaps others had a better experience?
No you’re right - it went with a very quiet whimper. I’d say the only exception was the M.J.Fox foundation who used the opportunity to stage a major fundraising campaign. I thought it was supposed to be a day of raising awareness so that people become aware that there is a lot more to Parkinsons than just shaking.
I copied links off here and reposted to my Twitter and Facebook accounts to raise awareness but sadly the day passed far to quietly.
Hi to all
Last year at the very last minute I found out that it was World PD day so I ask Parkinson’s uk for some balloons leaflets etc to take to our village shops for them to trim up their windows, just to make folk aware what PD was, the shops were great as it was Friday and the Monday was PD day they did us proud also collection boxes left in the shops which had been filled, Excellent I thought.
Once again we are only told about PD day at the last minute. I had a look on TV news but not a word was mentioned. Nothing so my qustion is this
HOW CAN WE MAKE PEOPLE AWARE OF PD
When we can not find much about World PD day ourselves.
Thank you for helping us spread awareness about Parkinson’s and I’m really sorry to hear that you didn’t receive good enough notice about World Parkinson’s Day. This is surprising given that we have been promoting it via the ParkinsonUK website for several weeks and also had it on our main page.
However; we definitely take your comment onboard as we are always looking at ways to improve our work. Please feel free to share your comments and/or opinions with our feedback team at [email protected] who can address this matter further.
Thank you Reah
for your answer I will get in touch and email the feedback team.
This was written primarily for the feedback team following on from Reah’s response on the forum, however as I was writing it seemed to me to be a forum response too. I have therefore decided to post to both
I have been reading with interest recent comments on the forum that World Parkinson’s Awareness Day was felt by some to be poorly promoted and Reah’s response that this ‘… surprising given that we have been promoting it via the ParkinsonUK website for several weeks and also had it on our main page.’
I knew about World Awareness Day because it was mentioned on the forum to which I am a regular contributor. I accept it would have been heavily promoted on the Parkinson’s UK website but I wonder if you shouldn’t be looking to be more creative in the way you promote this event.
I have Parkinson’s but am not a regular visitor to the Parkinson’s UK website. That is not a criticism of the site per se, It is reassuring to know you’re there and I use it as I need since I know the information etc can be trusted but I probably only visit the site a couple of times each year. By the same token when first diagnosed I attended a local support group a few times but it wasn’t for me at that time and I haven’t attended since. Nor do I use social media such as facebook or twitter and I don’t share a lot with family and friends unless it is something exceptional. They know I have Parkinson’s and they know about Parkinson’s UK. It is up to them to decide what involvement they have. I have no wish to make them feel obliged because I have brought something to their attention. My point being that maybe you need to consider promoting the event more widely before the day itself arrives and in ways that it may reach members of the public who know nothing of Parkinson’s, would not know about Parkinson’s UK or visit its site or, be like me for whom it does not feature heavily in the grand scheme of things. I don’t know what kind of budget this event attracts but whether it be newspaper or tv ads, billboards or leaflets or whatever, the aim would be to make a wider audience aware of events and so on that will happen on the day.
Although raising awareness is important for all, I have long felt that the main target should be those with no connection with Parkinson’s; it is these people that make life difficult by their lack of knowledge and understanding and I doubt many will come across Parkinson’s in the usual course of events.
You may feel that since I effectively cherry pick where Parkinson’s UK is concerned and appear to be quite passive in any efforts to raise awareness then I have no right to speak up on this subject. To me however it is entirely in keeping with how I manage my Parkinson’s - it is not the dominant thing in my life so nor are the support systems that go along with that. However, nor am I as passive as it appears. I have always been open about my diagnosis and am happy to answer any questions etc. That and I hope some of my replies to posts on the forum, is my contribution to raising awareness, educating and managing Parkinsons in whatever context it arises. . As I have said repeatedly on the forum, everyone must find their own way to live with Parkinson’s, this happens to be mine. I’m not asking anybody to agree with it.