The best things in life are free?

 

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 the message I had sent to 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, 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 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 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.

Update: April 2019

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.

On reading the comments, I am struck at the lack of understanding and that there is zero consideration for who will be pay 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 their freebie.

I  posted my own comment on this page and also sent a direct email to Latest Deals asking that my personal details be removed. Latest Deals removed my comment almost immediately and they blocked me from making further comments but at the time of writing this update, my personal information is still published on their website, having it seems been there for a year or more.

Shelly Ann 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 non profit group which I run in my spare time, not a large conglomerate and the only people  who ever advertised what I do as ‘free samples’ were the 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.

Shelly Ann also complained that 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 what she wanted.

Sarah wrote ‘If it was me, I’d clearly state ‘this item is available for a small donation’.

If Sarah had 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.

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 Shelly Ann, Sarah and others 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.

The Big Sunflower Project logo

 

Spaceathlon: a fundraising challenge

During May my dad and I will be taking part in a Spaceathlon Challenge to raise funds for the Neuromuscular Centre (NMC) in Cheshire, where we both attend for physiotherapy treatment. The NMC is a national Centre of Excellence for adults with muscular dystrophy, providing ongoing, specialist physiotherapy, employment and training, advice and support to 1,000 individuals (and their friends, families, and carers) affected by neuromuscular conditions. The centre is also a charity, but its services are free for its service users, many of whom travel from across the country and further afield to access the knowledge and expertise available.

Neuromuscular conditions affect over 70,000 individuals in the UK and range in severity, onset and presentation. Some conditions are diagnosed at birth, while others do not become apparent until later in life, as was the case with dad and me. However, all conditions present challenges and affect independence, mobility and quality of life and all share one unifying feature, muscle weakness, which is often progressive and can lead to changes in the ability to walk, climb stairs, washing and dressing. Individuals affected by neuromuscular conditions are often less mobile, less able to access active exercise and therefore more at risk of secondary health problems in the future.

You can learn more about the NMC and neuromuscular conditions in the short film below – hit the triangle in the middle of the screen and it plays like magic.

Toni and Mike

Dad and I began attending the NMC shortly after getting our diagnosis of centronuclear myopathy and are incredibly fortunate that it is almost on our doorstep. Finding the NMC was a godsend, for on getting our diagnosis, we were told there were very few others in the world with the illness, that there was no treatment and that no long term prognosis could be provided. In addition no counselling was given to help us come to terms with what our futures held and to enable us to deal with our diagnosis emotionally.

For a while previously, I had attended a physiotherapy clinic at my local hospital – the physio who was not trained to understand muscle diseases would spend considerable time twisting and moulding my body and placing my feet and arms in a particular way, only for me to immediately ‘flop’ the moment she left me to stand alone because my muscles are simply not strong enough and therefore totally resisted this regularly prescribed type of physio treatment. Attending for physio at the NMC however is a different matter entirely. My treatment is designed for me and rather than trying to make my body work normally or trying to cure me, the focus is on maintaining the movement and flexibility that I currently have for as long as possible. My physios understand muscle disease and always take the time to ask about recurring problems or whether there are any new issues since my last visit and are able to offer a number of ‘on site’ solutions for regular or one off aches and pains, such as an infra red heat lamp, ultrasound and ‘wellies’ which help with circulation problems.

Attending the centre has also connected my father and I to others with muscle diseases and although they have different conditions to us (there are 60 to 70 types of MD), they understand what we are going through, as we all experience similar physical problems. The NMC also provides other types of support, for instance they were able to advise me on an Access to Work scheme and provide me with a letter of support to give to my employer and I know that should I require any other assistance in the future, they would be there for me.

Without the NMC my father and I would still be living with the knowledge that we have a chronic health condition but feeling very isolated and not knowing where to turn for help and support and although we are both aware that our condition is progressing and that there is no cure for us, attending the NMC has enabled us to re-gain some control in the battle against our disease. We are grateful to have found a sort of home inside the walls of the NMC and taking part in the Spaceathlon, is an opportunity for dad and I to give something back by taking part in a fundraising activity for the centre. Also to raise awareness of the work of the centre and the benefits of exercise for people with muscle conditions, as well as improving our own fitness.

The challenge

Inspired by British Astronaut Tim Peake, the effects of zero gravity during space flights which cause astronauts to experience loss of muscle tissue and bone density and the Space to Earth Challenge set by Tim to get fit with him, the aim of the Spaceathlon is simple, to encourage the whole NMC community to contribute to a cumulative distance of 460km (the maximum distance between the earth and the ISS) by taking part in physical activities and to raise funds for the centre in the process.

Research indicates that exercise (at an appropriate intensity and frequency) is beneficial for individuals with muscle conditions, not only in providing a stimulus to maintain muscle strength but also improving whole body fitness and reducing soft tissue tightness and pain. So the NMC has asked their clients to think about their own levels of activity and to set themselves a challenge. This could take the form of a specific time or distance or simply doing a little more active exercise than usual (as is the case with dad and I), with some clients aiming to cover a half marathon distance on the centres bespoke, wheelchair accessible arm and leg pedals, swimming the length of the ISS in the hydrotherapy pool or rowing to the stratosphere. While some are incorporating three elements to their Spaceathlon challenge, linking it with the triathlon theme.

The science bit

So how does Tim Peake and the Space to Earth Challenge relate to neuromuscular conditions? The progressive nature of muscle conditions is similar to observations made of astronauts in space. After five months in orbit above the earth an astronaut would typically lose as much as 40% of muscle and 12% of bone mass. Therefore astronauts have to undergo daily rigorous exercise to try to help counteract the loss of bone and muscle fibre, together with other risks such as shrinking legs due to fluid redistribution, deterioration of weight baring bonus and muscles and forgetting how to walk, that come with living in microgravity. And just like like an astronaut, if people with neuromuscular conditions don’t exercise, their muscles will waste away faster still, so some physical activity, despite what people might think, is really important. It is not at all easy but helps with cardiorespiratory fitness, energy efficiency, weight management and muscle performance – exercising muscles maintains flexibility, length and strength and helps maintain better function for longer.

Similar to a thermostat that only maintains a temperature when it is needed, bodies only maintain or build muscle when muscles are used repeatly. This is why body builders are able to gain muscle bulk by repeated weight lifting and also the reason why astronauts need to do so much exercise when in space – where the lack of gravity reduces the stimulation the body would normally receive from physical activity, taking away muscle tissue and bone it believes to be unnecessary. This mechanism is reproduced in neuromuscular conditions, where reduced activity and reliance upon powered mobility aids such as wheelchairs, leads to a reduction in muscle mass.

And finally

The NMC is a charity and 60% of the running costs of the centre come from fundraising, so if you are able to spare even a couple of pounds, dad and I would be incredibly grateful. Visit our JustGiving page below to make a donation – it will inspire us to walk and pedal even harder and enable us to give something back, to the place that helps keep us  and so many others with muscular dystrophy going.  And for progress reports on how we are getting on, keep checking the page – we will update this as we go along.

Further information

Louis and Delia

Louis Bowers Abram and Delia Eileen Clarke were my grandparents on my fathers side of the family.

Delia was the daughter of Northamptonshire Police Sergeant Albert Edward William Clarke and was one of five children. Louis was the second son of Joseph Charles Abram, an Army Sergeant and Millicent May Bowers.

During the 1930’s Louis passed exams set by the East Midland Educational Union in Motor in Practical Mathematics, Workshop Science and Principles of Engineering and Engineering (Mechanical). He later worked at S and W Motors Limited where he was indentured as an apprentice from May 1931 to May 1933, as a Motor Engineer at York Ward and Rowlatt  from May 1933 to May 1934 and at Gilmour and Vale a company that manufactured engineering components.  He also worked at Vauxhall Motors in Luton, retiring in 1970 after 25 years service having established ‘an excellent reputation in respect of loyalty, conscientiousness and timekeeping’. He was a Corporal in the Royal Air Force and learnt to fly in a Tiger Moth at Sywell but war broke out on the day he was due to take his test, so he never saw active combat.

I remember visiting my grandparents at their homes in Luton and Chester. My grandad grew tomatoes in a greenhouse and to this day, I can’t smell tomatoes without thinking about him. My nan I remember would wear more than one pair of glasses at a time and also, back when we had paper money, would use the money as writing paper to work out how much she owed someone or who much they owed her. In writing this, I am surprised at how many photos of my nan I have found where she is standing, as I only really ever remember her with mobility issues  – firstly using sticks to get around and later being confined to a wheelchair.  Nan’s condition went un-diagnosed during her lifetime but today it seems likely that she could have had centronuclear myopathy like dad and I.