Hi, I was dx 7 years ago and and to give up work last February. I felt devastated at the time, but, having been an amateur singer for many years, mainly with choirs and smaller groups, I realised that this could be my 'silver lining' and that i could try and fulfil a long held ambition to create a solo album of songs that I enjoy singing, while my voice still remained unaffected and before my condition started to deteriorate to the point that I could no longer do it. Having discovered how easy it was to download backing tracks and, just as important, having found a good recording studio and engineer, I have managed to fulfil this ambition and am, at the same time, raising funds for Parkinson's UK from the CD I produced, having, to date, raised £7,000+. I am not blowing my own trumpet, but feel I have had to take the initiative myself as, when I asked PUK for some publicity for my project, the response I got was "There will not be an issue in January as they are in the process of reviewing the newsletter. The editor said that if there is an opportunity to highlight your CD in a future edition, she will let me know". So far, I have still not been contacted by the editor or anyone else regarding highlighting my CD. What I don't understand is what I have to do to generate sufficient interest within the editorship to publicise my fundraising project and help me raise more funds more quickly. The sum raised to date has all been paid direct to PUK via http://www.justgiving.com/ianoster or through donations and the feedback has been so positive and encouraging that I am now half way through making a second CD. Any suggestions?
It's not clear from your message above who you contacted but it sounds like it might have been someone with Network News, our newsletter for local groups. Is that right?
Indeed there wasn't an issue in January- the newsletter is being reviewed and we don't have an editor at the moment.
There may be other alternatives for publicising your CD though we cannot promise that this is the case. We'll pass your message along to my colleague Lee on our media team to see if he might be able to help further.
In any event, thank you so much for putting your talents to supporting us!
I was advised by our local fundraiser, Joanne Dobbie, to contact Lee Armitt with regard to publicity. Lee then sent me the email I referred to in my first post.I did, at the time, express my deep disappointment at the attitude adopted by the editor when all I was trying to do was to get maximum exposure for my project and in turn raise more funds for Parkinson's UK. I find it incredible that she was not prepared to give any kind of commitment thus depriving PUK of a potentially good source of income from people who are directly or indirectly affected by Parkinson's.
I am hoping to release my next album before Easter, and, on the back of the success of my first album, have already had great interest shown - as well as an offer to help with publicity and distribution, from a national cancer charity. This, to me, is a very important and useful offer as, whilst I have been able to record, edit and produce the CDs with little outside help, I am not a salesman and the publicity aspect of the project is what I needed most help with. It's just a pity that PUK, with which I of course have a great affinity being a Parkinson's sufferer, have not demonstrated to me any willingness to assist.
Just to clarify, there have been resource issues and staff absence at the Network News and so there have not been January and February issues at all. No one was able to give a commitment because the future of the newsletter wasn’t clear.
I have had a chance to speak to Lee and Joanne and I understand that they have been in regular contact with you since October offering lots of routes to publicising your CD but it seems this hasn’t been useful.
Lee is happy to discuss this further if you wish. But if you’re unhappy with what we were able to offer so far, maybe it is better to explore what the cancer charity you mention can offer.
Though we’re really grateful for your efforts to raise money for us, in this case it seems we weren’t able to help you as you wanted.
The solution is obvious!!! Having read the thread, is there any reason why Chanteur shouldn`t have a page or part page devoted to him to promote his CD in the PARKINSON magazine as opposed to the Network News? Undoubtedly, he deserves the recognition of recording his own CD (with his second one on the go) in aid of this charity for which he has raised around £7,000 of his £10,000 target, the money already having been received by PUK via www.justgiving.com/ianoster
Thank you for your support, although I fear your comments and suggestions will also fall on deaf ears. Strange attitude, don't you think, to an attempt to increase fundraising?
My name is Alison and I’m the editor of The Parkinson magazine.
We love to hear about what people are doing to raise money for the charity and we’re really grateful for every single person’s efforts, whether they’ve raised £10 or £10,000.
But it’s because there are so many people fundraising across the UK, that we could not possibly include everything that everyone does in the magazine. It’s really challenging to decide which stories to include.
Most often, because it’s a UK-wide magazine, we focus on fundraising stories that the greatest amount of people can get involved in, or that promote major Parkinson’s UK fundraising events.
So, while I wouldn’t be able to promote your CD, I would love to hear more about your singing, because we may be able to feature your story in a future issue of The Parkinson. For example, we may do a story about Parkinson’s and singing – and that may be an article you’d like to contribute to?
I’d be more than happy to chat about this further. If you’d like to contact me my email address is [email protected] or you can call me on 0207 932 1316
I am interested to hear what you say about there being so many people fundraising for Parkinson's, but how many of these are themselves Parkinson's sufferers? I had thought that through the magazine there would be many people, who would read the article and then contribute to the charity by purchasing a CD or just giving a donation. Who knows it might have spurred on other sufferers to use there talents to raise funds for PUK. In fact, several people, who have heard me recording or have purchased a CD have already stated that it has made them eager to replicate my endeavours.
I have now almost finished my second album and the charity I have chosen to work with has already stated they will put out press releases, both nationally and locally and in their own publication. This is as a result of advice through this communication thread, received on the 11th of February, to work with another charity.
I am sorry that you did not feel that my efforts, which as a Parkinsons sufferer were genuine efforts and which to date have raised over £7,000, warranted any effort being made by PUK to assist me in maximising funds from this project.
Nevertheless, I hope the money will be put to good use and I wish you every success for the future. I will let you know in due course how much my CD raises for the new charity.
Sad, but not surprised, to say that I can't even get a receipt for further funds sent to my local PUK fundraiser nearly two weeks ago. Great recognition for single-handedly raising almost £8,000 for the charity.
I've checked with the regional fundraiser and she received your money on Tuesday. She's sent you a letter of thanks so you should receive that very soon if you haven't already.
Thanks again for supporting us and raising such a fantastic amount.
I have just received by post a 4-page (folded A3) flyer entitled "Welcome to Fundraising News". In it are details of half a dozen or so upcoming events to raise money for PUK.
Notwithstanding my project was not an "event" would it have taken any great stretch of imagination or, more importantly, additional expense to have included a brief report of how I had raised almost £8,000 from my recording and given details of how to obtain a copy of my CD?
I DO NOT ask this because I want the glory of people knowing how wonderful I was, but so that anyone who reads this flyer might be impressed and curious enough to ask me to send them a copy which in turn would have increased the return on the project significantly and put more money into PUK's coffers.
That's why I felt so frustrated with the inertia of those who publish this flyer and why, after constantly banging my head against a brick wall, I decided to turn my fundraising efforts to a different charity.
Thanks for your letter Joanne. Just a shame no-one at PUK HQ felt my efforts warranted an acknowledgement, but, there again, why should I be surprised on past form?
