In 2011 I established The Big Sunflower Project. The project 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 targeted by freebie websites, causing 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 appear on the freebie websites, their social media pages and in their newsletters which are emailed to their subscribers. I have never been consulted in advance about the promotions and they result 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, 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 do nothing either.
I have emailed the freebie organisations direct and asked that they remove the information from their websites and social media pages but only ever heard back from two. One advised they saw my project on another freebie website and only copied the information. 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 via their website, only to find a message I had sent them the previous year, asking them to remove their promotions, staring me in the face.
The issues caused by the freebie websites include the huge number of requests for seeds that are generated. It is like the worst spam email. Watching an inbox fill up with emails before your eyes, knowing that you are going to be unable to fulfill most of the requests, is the most hopeless feeling. Many of the requests refer to ‘your recent promotion’ or ‘the promotion on your website’ but the promotions are nothing to do with me and many of the people requesting seeds don’t seem to understand this. The disappointment caused to the people who had hoped to receive free seeds, generates horrid emails from some and begging emails from others. This is incredibly distressing. One email arrived from a man who advised he worked with deprived children who were used to knock backs and I had added to the problem. Another person emailed saying they were on benefits and went on to list the benefits they received. Someone else wanted seeds but couldn’t pay for them because they had to pay for a funeral and another couldn’t make a donation for seeds because they got their food from a food bank. There are many other examples I could list.
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, which secures the project for future years.
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 freebie promotions is unbearable but the freebie websites couldn’t seem to care less.
I am so very proud of what I have achieved with the project but I am just one person. I always refer to the project as a voluntary organisation with charitable aims but 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, doing 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 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.
Finally, I am hoping that in time my post may reach someone who can help or advise on the situation and stop the people who are causing so much trouble to something that only ever wanted to do good.
It is now over a year since I wrote about my experience of freebie websites. Once my world stopped turning, I made a number of changes to the way the project operated. It had become clear that many people were bypassing the website entirely, having been given only an email address to apply for seeds, so were not reading about the aims of project. The email address was removed from the website and replaced with an online form, which forced people to apply for seeds via the website. I also learned how to exclude people finding the website using particular search terms such as ‘freebies’, ‘free samples’ and ‘free seeds’. A note was added to the application form, advising that the project relies on funding and donations to keep going and was not associated with any freebie websites. And now when an application form is submitted, an automatic response is generated, so that people receive an acknowledgement advising their application has been received. Finally, when an application is accepted, I send an email with further information, so there can be no doubt what the project is all about.
This year seed distribution has been calm and organised but the freebie websites are still behaving badly, as I discovered when I found the post below, created by someone who did not receive seeds and was unhappy with the email I sent apologising for any disappointment she may have been caused.
There is no thought about who is paying for their freebie. The comments, without exception, are from people who want a freebie, they want it now and they don’t care about the cost or how they get it.
One freebie hunter wrote she was tired of receiving ‘passive/aggressive emails blaming other websites for sharing when really I think these companies ought to take a bit of personal responsibility when putting up pages saying ‘free samples’, then backtracking’.
The Big Sunflower Project is a voluntary non profit group which I run in my spare time and the only people who ever advertised what I do as ‘free samples’ were freebie websites. Throughout every year of the project, seeds have been of a limited number and intended primarily for those affected by centronuclear and myotubular myopathy and those wanting to raise awareness of the conditions, as well as community groups, educational establishments and good causes.
The same person also complained she only requested three sunflower seeds but sending three seeds costs as much postage as sending 60 seeds. She makes no mention of having offered to made a donation for her seeds, only of her great unhappiness at not receiving any.
Another person wrote ‘If it was me, I’d clearly state ‘this item is available for a small donation’. However, if she had taken the time to read the website, she would have seen it states ‘There is no charge for seeds or for the cost of postage, we do, however, welcome donations to ensure the future of the project and to enable seeds to be sent to as many people as possible each year.’ She would also have seen there is a facility which allows participants to make a donation.
And hearing the project described as collecting data/a publicity drive/a con was just upsetting.
I posted my own comment on this page and also sent a direct email to Latest Deals asking that my details be removed. They removed my comment almost immediately and went on to block me from making further comments. At the time of writing this update, information is still published on their website.
My project has now been promoted by numerous freebie websites without my knowledge. It has been promoted for an entirely different purpose than the one I intended, turning it from an initiative that raises awareness of rare medical conditions, into a cheap giveaway. The behaviour of these websites, to my mind, amounts to fraud. They advertise what I do as ‘freebies’ and ‘free samples’, something I have never done, advertising on a large scale and displaying messages on their websites that allow me to take the blame for their actions.
So, one year on, I find myself once again trying to focus on all the lovely things the project has achieved. 2019 is the ninth year of the project and in stark contrast to all the freebie hunters demanding something for nothing, the project has received seed donations this year, from people who grew sunflowers in 2018 and harvested the seeds. Monetary donations have also been made to the project and a donation of stamps was received too. And next year will be the 10th anniversary year of the project, something of which I am incredibly proud. So while the freebie hunters throw rocks, safely sat in front of their computer screens, I intend to focus on the kindness of strangers and look forward to another summer growing sunflowers.
In 2020, along with sunflower seeds, the project received a large donation of vegetable seeds too. Seed distribution began as normal and anyone who applied advising their sunflowers were to be grown on an allotment, received vegetable seeds also. Then coronavirus took hold around the world and turned everyone’s lives upside down. Feeling rather helpless and desperately wanting to do something positive, I began to leave seeds and small plants in a box outside of my house with a notice saying ‘please take one’, together with business cards and flyers, which explained about the project.
I know the gesture was appreciated, some neighbours thanked me when they saw me, thank you cards arrived from others. Sadly however, the project was again taken advantage of, with a neighbour brazenly stocking her garden, which went onto become a sunflower paradise from August until early December.
I had always been aware there were people who applied for seeds, successfully grew their sunflowers and didn’t submit photos and it was always disappointing but watching this happen on such a scale and at such close quarters was heartbreaking, particularly in a year like 2020, when charities and charitable projects struggled so much. The project was stitched together with kindness, generosity and goodwill and only ever asked for photos to raise awareness of rare diseases, so in 2020, a year like no other I have ever known, the tenth year of the project, also became the final year of the project.
Further information about the work of The Information Point and The Big Sunflower Project can be found below.