In 2011 I established The Big Sunflower Project – a project that raises awareness of the rare neuromuscular conditions known as centronuclear myopathy by giving away sunflower seeds. You can read more about the project and how I came to start it below.
2018 is the eighth year of the project and for three of these, the project has been promoted on a number of freebie websites which has caused seed distribution to stop – as I write this, I don’t know if the project will continue past the end of this year.
The promotions have appeared on the freebie websites, their social media pages, in their newsletters and are mailed to their subscribers. I am never consulted in advance before they do their promotions and this results in complete chaos. When this happened earlier this year I received in the region of 800 emails over two days.
To date I have been unable to find out who regulates the online activities of these industries. I have tried contacting groups such as the Internet Watch Foundation and Get Safe Online, also Advertising Standards, the Direct Marketing Association, the Information Commissioners Office, Trading Standards and Facebook. Mostly my queries have gone unanswered or it has taken months for people to get back to me – one organisation advised the internet was like the ‘wild West’ and there was no help available to me, another that as the adverts had been taken down in the time it took them to reply, that there was nothing they could do. I have also tried doing a ‘Who Is’ search to find out who hosts the websites but the website hosts have done nothing.
I have emailed all the freebie organisations and asked that they remove the information from their websites and social media but only heard back from two. One advised they saw my project on a freebie website and copied the information – therefore it wasn’t their fault, another quickly sent a £20 donation which they stated was ‘a gesture of goodwill and by no means any admittance of error on our part’. I contacted a third of the websites via their Facebook page, as they had no way of making contact through the website, only to find the message I sent them last year asking them to remove their promotions staring me in the face.
The aim of The Big Sunflower Project is to raise awareness – it does this by sending seeds to people who have never heard of the conditions and requesting photos in return. The photos are posted online which again raises awareness of the conditions. If I am fortunate, some of the participants make a donation for their seeds, this secures the project for future years and enables me to send seeds to as many people as possible each year.
Funding and donations are crucial for the project and I am unable to run it without them. There is no team or large organisation behind the project, it is just me and the level of work that is generated by these promotions is unbearable but the freebie websites couldn’t seem to care less and unless I can stop them doing what they are doing, I am not sure I will be able to continue for another year.
The issues caused include huge numbers of emails I receive, it is like the worst spam email – many of the requests refer to ‘your recent promotion’ or ‘the promotion on your website’ but the promotions are nothing to do with me. Then there is the disappointment caused to the people who had hoped to receive free seeds which generates horrid emails from some and begging emails from others which is incredibly distressing.
I am so very proud of what I have achieved with my project but I am just one person. I always refer to the project as a voluntary organisation with charitable aims – the project doesn’t have charitable status and I certainly don’t have the finances to take legal action. It feels as if each time the freebie websites promote the project I just have to take it, while they break what I have created, then do nothing to help fix it and I am left to pick up the pieces.
So what am I hoping to achieve by writing about what has gone on? I guess, this is me trying to not give up without fight and doing the one thing I feel able to do right now and that is to write about it, in order to put my own thoughts in order and see if I can navigate my way through the chaos that has been caused for another year.
I am also trying to focus on all the lovely things the project has achieved, growing from an idea eight years ago, to now sending seeds to people in the UK and Europe and having participants around the world, both those affected by centronuclear and myotubular myopathy and those who have never heard of the conditions. The project set out to raise awareness of centronuclear and myotubular myopathy but now sends seeds to community groups, good causes and education establishments, so helps their work too – all funded entirely by donations and funding.
Finally, I am hoping that I may find someone to help or advise on the situation and stop the people who are causing so much trouble (and I wonder for what gain), to something that only ever wanted to do good.