This time last year, I called time on the The Big Sunflower Project with a heavy heart. My little awareness project had got huge and the demand for seeds, applying for funding and distributing seeds all by myself, was at times overwhelming. However, as 2021 got underway, people began to contact me to say they still wanted to take part in the project and they were happy to buy their own seeds or plant seeds they had harvested. I could not have been more happy.
2021 was the eleventh year of The Big Sunflower Project. Participants old and new joined the project and some truly beautiful photos were shared on social media to raise awareness of centronuclear and myotubular myopathy.
If you took part in the project this year, thank you so very much, I hope you enjoyed growing your sunflowers as much I enjoyed looking at your photos and being part of the project community of sunflower growers. To date participants have joined the project from across the UK, Ireland, the Isle of Man, the USA, Costa Rica, Argentina, the Philippines, Australia, New Zealand, Germany, The Netherlands, France, Croatia, Hungary, Sweden, Austria, Lithuania, Greece, Poland and in a first for the project this year, the Middle East.
The aim of The Big Sunflower Project is to raise awareness of the rare neuromuscular conditions known as centronuclear and myotubular myopathy. One of the ways the project does this is by sharing photos, another by sharing participants stories on the project website and on social media. If you have grown sunflowers with the project this year and would be willing to share your story to help raise awareness of centronuclear and myotubular myopathy, please get in touch. You can read stories from past projects below.
After almost 20 years, Toni Abram, founder of The Information Point and The Big Sunflower Project, will be stepping down from her roles at the end of this year. Below she writes about her work over the last twenty years and shares some of her favourite photos.
I established The Information Point in 2001 following my dad and I being diagnosed with centronuclear myopathy in 1998. Like so many with centronuclear and myotubular myopathy, the journey to diagnosis was not an easy one. I had seen three doctors over a period of ten years but my symptoms were mild and I went without a diagnosis until dad began to experience problems in his 50’s.
I remember receiving the diagnosis felt overwhelming and lonely – we were told there were very few others in the world with our illness, nor was there a treatment. So, when I established The Information Point in 2001, the aim was to provide a website dedicated specifically to centronuclear and myotubular myopathy, where people could visit to find all the information they needed in one place, in the early days of diagnosis and beyond – helping others in their search for information; bringing those with the conditions together, whatever their age, whatever form of the conditions they had and wherever they may be in the world; and raising awareness of the conditions too.
Specific information about centronuclear and myotubular myopathy was posted on the website, together with information about other myopathies and news about centronuclear and myotubular myopathy from around the world. Areas for research news and resources were also developed, together with a ‘share a story‘ area for all forms of the condition, including unknown patterns of inheritance. And a newsletter, the predecessor to Our World, published stories of interest to the centronuclear and myotubular myopathy community, including a series of interviews titled All About Me which aimed to give people the opportunity to discuss their diagnosis and how they dealt with it, as well as the opportunity to talk about the things that made them, such as their favourite books, films and music; what their favourite childhood memory was; who most influenced their life and why. The interviews aimed to show that a disability didn’t have to define a person and that a person with a disability was still just a person.
In 2012 the first Our World newsletter was published. It provided an opportunity to not only share the latest research and fundraising news but to give those with centronuclear and myotubular myopathy the opportunity to have their voice heard, by telling their stories, about their lives, their way – achievements, milestones, fundraising events and more, which today has led to an amazing resource for families in 2020 and beyond receiving a centronuclear or myotubular myopathy diagnosis.
The Big Sunflower Project first invited people to grow sunflowers in 2011. I have always loved the way that sunflowers grow to such dizzy heights, as if they are on a mission to touch the sky and nothing can hold them back. It occurred to me that many charity fundraising/awareness raising type projects involved people doing something physical – being sponsored to run, swim, climb or bicycle, something that even I, although ambulatory, would not be keen to do. However popping a seed in a pot and nurturing it for a few weeks was something most people could do, whatever their physical ability and that was very appealing to me, because it meant that those diagnosed with centronuclear and myotubular myopathy could take part too.
The idea was simple – give away sunflower seeds to raise awareness of centronuclear and myotubular myopathy and ask people to share photos of their sunflowers online. The project was only intended to last for one year but this year sunflowers were grown for the tenth summer.
Over the past ten years, 4,766 photos have been shared, all of which have been posted on social media to raise awareness of centronuclear and myotubular myopathy. Participants have joined the project from across the UK, Ireland, the Isle of Man, the USA, Costa Rica, Argentina, the Philippines, Australia, New Zealand, Germany, The Netherlands, France, Croatia, Hungary, Sweden, Austria, Lithuania, Greece and Poland.
As the project grew, around 300 packets of seeds were distributed each year, with seeds sent to those affected by centronuclear and myotubular myopathy, together with schools and nurseries, community groups, groups who work with disadvantaged people, hospices and youth groups to name a few, so as well as raising awareness of centronuclear and myotubular myopathy, the project supported the activities of these groups too. In 2019 the project was nominated as a Community Hero as part of the UK Government Department for Digital, Culture, Media and Sport (DCMS) Local Charities Day.
Run from my home, in my spare time, neither The Information Point or The Big Sunflower Project had charitable status and I came to describe them as voluntary, non profit organisations, with charitable aims, run at a grassroots level, when needing to explain what they did. As such neither group received any regular funding, rather funding was sought as and when required, all of which was ploughed back into the work of the groups. On one occasion The Big Sunflower Project undertook a crowdfunding project and on other occasions competitions were entered – success with the Galaxy Hot Chocolate Fund and the Skipton Building Society Grassroots Giving initiatives ensured that enough money was incoming to cover running costs. Banks, supermarkets and more assisted with financial donations and other organisations donated their products, services, time and expertise.
Deserving of a particular mention are Net-work Internet who in 2006 began sponsoring The Information Point and have provided the web hosting and domain name at no charge ever since. Also Extravision, who provided The Information Point with their email marketing service free of charge for many years, meaning Our World could be sent quickly, easily and professionally. All the companies who provided sunflower seeds at no charge or with large discounts, helping make the most of limited resources; the lovely sunflower growers who so kindly took the time to harvest their seeds and donate these to the project and all the individuals who donated money that kept things ticking over. You all rock and The Information Point and The Big Sunflower Project would never have happened without you.
Working on The Information Point and The Big Sunflower Project has been an incredible experience. I have learned so much and it has been a joy getting to know so many people from the centronuclear and myotubular myopathy community in the process. Deciding to step back hasn’t been an easy decision but the time to focus on other things in my life has come … at least for the time being.
It is said that it takes a village to raise a child but I believe it could also be said that it takes a village to achieve everything that has been achieved within the centronuclear and myotubular myopathy community over the last 20 years too – from little known rare conditions to clinical trials is no mean feat.
There are now many wonderful big hearted people working behind the scenes, making many wonderful things happen for the community worldwide – people who understand only too well what it means to live with a diagnosis of centronuclear and myotubular myopathy, because their own family is, or has been impacted by the conditions and who I know will appreciate any support you can offer in the years to come. So please, do what can, when you can, if you can, to support them; continue to share your stories; be kind to one another … and if you see a sunflower, please think of me.
2020 was the tenth year of The Big Sunflower Project with people taking part in the UK, the Netherlands, France, Germany, Poland, Sweden, Greece, the USA, Australia and the Philippines.
As always schools and nurseries received seeds. Other recipients included home educating families, children learning from home due to coronavirus, schools that remained open to the children of key workers, NHS hospitals and medical centres, brownies, a horticultural society, a charity that supports people recovering from homelessness and addiction, an allotment project for children and adults with additional support needs, a charity which works with people who have learning disabilities and a residential home for older people with dementia. This year seeds and small plants were also given away in our local neighbourhood to spread a little happiness during a time in which happiness has been in short supply.
This year 251 places were plotted on the project map which can be seen below – click a sunflower to learn more about the people growing sunflowers in that location.
In the news
The project received some lovely publicity over the last twelve months which can be read below and we are incredibly grateful to those who have taken the time to write about what we do.
We are also grateful to all the Clinical Commissioning Groups that promoted the project to their staff and on social media at the beginning of the year.
The Blakemore Foundation
In August, we were delighted to learn that we were to receive a £100 donation from the Blakemore Foundation, a charitable trust established by the Blakemore family to support good causes across A.F. Blakemore’s trading area (including the SPAR trading area.) Funding such as this is crucial to the work of The Information Point and The Big Sunflower Project, so we are hugely grateful to the Blakemore Foundation for their support.
Over 750 photos were received from 69 participants this year. Every photo received was posted on social media to raise awareness of centronuclear and myotubular myopathy and these can be viewed below.
All photos received are shared on our website and social media pages and are really important to us, as they help raise awareness of the project and of centronuclear and myotubular myopathy. They also help evidence the impact of our work.
If you grew sunflowers this summer but have not yet sent photos it is not too late and we would still love to see these. Photos can be sent by email or shared on Facebook, Twitter or Instagram using #TheBigSunflowerProject.
Harvesting sunflower seeds
After a sunflower has flowered, its seeds can be harvested for planting again the following year. A single seed planted in the spring can produce many seeds in the autumn and these can be extracted from the seed head once a sunflower has dried out. Want to try saving your own seeds? You can learn how here on the project website.
Each year we ask people who have taken part in The Big Sunflower Project to share their story. The stories help us to raise awareness of centronuclear and myotubular myopathy and again help when we apply for funding. You can read stories from previous projects below.
If you have grown sunflowers with the project this year and would be willing to write your story too, please get in touch.
This year the project celebrated its 10th anniversary – it has been a very different year to the one anticipated but we hope if you took part, you enjoyed growing your sunflowers and that they brought a little sunshine into the lives of those who grew the sunflowers and those who saw the photos.
Further information about the project can be found on here on the project website and on the project social media pages.
2020 is the tenth year of The Big Sunflower Project and a milestone event for the little project, which originally was only meant to last for one year.
Obviously, no one expected the coronavirus situation and in March seed distribution was suspended. We tentatively re-started in April and during late April and early May, were able to get some final batches of seeds safely in the post. Recipients included children currently home from school, schools that remained open to the children of key workers, a charity that supports people recovering from homelessness and addiction, a specialist worker for the Early Help and Prevention Service, an allotment project for children and adults with additional support needs, Enable Scotland (a charity which works with people who have learning disabilities), a residential home for older people with dementia and a hospital caring for a child with myotubular myopathy.
Our intention at the beginning of the year had been to distribute 300 packets of seeds and we now know of over 290 people participating in the UK, on the Isle of Man, France, Greece, Germany, Sweden, Australia and the Philippines, so we are feeling a tiny bit proud of ourselves for getting so close to our target at this difficult time. 238 places are currently plotted on the project map which can be viewed below. Click anywhere on the map to open it up and click a sunflower to learn about the people growing sunflowers in a particular location. If you are growing sunflowers but cannot see yourself on the map, please ask to be added. As always, we wholeheartedly welcome anyone who grows sunflowers to take part in the project, even if they did not obtain their sunflower seeds from us.
In addition to posting seeds out, seeing as we had been thrown a curve ball, we decided to do a few things differently this year too.
Earlier in the year the project received a large donation of vegetable seeds. During the first three months of the year, these were sent together with sunflower seeds, to anyone who applied to the project and advised they had an allotment or stated they wanted seeds for a gardening club but from late April onwards, we began to give away our sunflower and vegetable seeds locally and we planted dwarf sunflowers, peas, cucumbers and runner beans and gave small plants away too.
Secondly, we decided to send seeds to schools we knew were still open for the children of key workers. We thought being a small person with all this chaos going on right now, together with not being able to be with your friends and watching your parents go off to work each day must be quite a scary time, so decided to send a few surprise packages to schools, in the hope it would bring some cheer, make the children feel a bit special and give them something to look forward to – hopefully staff and parents would get some enjoyment from seeing the sunflowers too. It has been very lovely to hear from some of the schools and other recipients that the seeds and plants have been well received
This year the project is once again being joined by ZNM-Zusammenstark! e.v. growing sunflowers in memory of Emil, who was diagnosed with myotubular myopathy and sadly passed away in 2016. Founded in 2015, ZNM-Zusammenstark! e.v. is a German association for those affected by centronuclear and myotubular myopathy. Visit their website to read what they have to say about being part of The Big Sunflower Project.
If you are using your sunflower seeds for educational purposes, fundraising events or would like to raise awareness of centronuclear and myotubular myopathy at the place where you are growing your sunflowers, you can download flyers from the resources area of the website. You will also find resources for teaching children and to start conversations about equality and diversity.
The Big Sunflower Project is an initiative of The Information Point for Centronuclear and Myotubular Myopathy. The aim of the project is to raise awareness of the rare neuromuscular conditions known as centronuclear and myotubular myopathy, by sending seeds to people who have never heard of the conditions and requesting photos in return, which are shared in the Information Point newsletter and on the project social media pages, again raising awareness of centronuclear and myotubular myopathy. There is no charge for project seeds or the cost of postage, the project does 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. If you have donated for your seeds, thank you. If you would like to donate, you can learn more about how to do this below.
This year project seeds have been donated by Thompson and Morgan and Tamar Organics. Seeds were also donated by Mike Rogers, Linda Fowler and Flower Power Lymo who grew sunflowers during the 2019 project and saved their seeds.
We are also grateful to everyone who has donated to The Big Sunflower Project since 2011, enabling us to celebrate our 10th anniversary. You can read about these people below.
Looking forward to seeing everyone’s sunflower photos over the summer. Until then stay safe everyone.
Further information about the project can be found on The Big Sunflower Project website and on social media, where photos can be shared using #TheBigSunflowerProject. Use #centronuclear, #centronuclearmyopathy, #myotubular and #myotubularmyopathy to help raise awareness of centronuclear and myotubular myopathy too.
Seed distribution for The Big Sunflower Project will begin again in early 2020, which will be the tenth year of the project.
The Big Sunflower Project is an initiative of The Information Point for Centronuclear and Myotubular Myopathy which aims to provide information about and raise awareness of these rare neuromuscular conditions. The project raises awareness by sending sunflower seeds to people who have never heard of centronuclear and myotubular myopathy and by sharing participants photos online.
300 packets of seeds containing 50 seeds will be distributed in 2020 (one packet of seeds per applicant.) Project seeds are sent free of charge to participants but anyone wanting to make a donation for their seeds can do so via this website.
Donations are ploughed back into the project – they enable the project to send more seeds to more people and help secure the future of the project.
The Big Sunflower Project is not associated with any freebie websites. Please do not share information about the project with these organisations. The project does not have the capacity to deal with the number of requests generated by being advertised on these websites and if featured, it will force seed distribution to stop.
Anyone is welcome to apply for seeds but priority is given to families affected by centronuclear and myotubular myopathy, community groups and good causes. Previously, seeds have been donated to schools and nurseries, community groups, groups who work with disadvantaged people, hospices and youth groups to name a few, so as well as raising awareness of centronuclear and myotubular myopathy, the project supports the activities of these groups too.
Kindness was definitely the motivation in sending the seeds. I can only imagine what it must be like to be a small person with all this chaos going on right now and on top of that, not being able to be with your friends and watching your parents go off to work too. So, I decided to send a few surprise packages to schools that I learned were still open, in the hope it might make them feel a bit special and give them something to look forward to. Hopefully staff and parents will get some enjoyment from seeing the sunflowers too.
Photos submitted to the project are shared on the project social media pages (Facebook, Flickr, Instagram, Twitter, LinkedIn) and in The Information Point newsletter Our World. Photos are also sometimes used in applications for grants and funding, without which the project could not continue.
It is only possible to send seeds to the UK and Europe but the project wholeheartedly welcomes participation from anyone who wants to raise awareness of centronuclear and myotubular myopathy by growing a sunflower and people who buy their own seeds are welcome to join in (if you would like to do this, please get in touch advising where you will be growing your sunflowers, so you can be included on the project map.)
2019 was the ninth year of The Big Sunflower Project. This year seeds were sent across the UK and to The Netherlands, Germany, Hungary, Sweden, Lithuania and Germany and sunflowers were also grown in Canada, the USA and Argentina. For the third time the project was joined by people growing sunflowers in memory of Emil, who was diagnosed with myotubular myopathy and sadly passed away in 2016. And for the first time sunflowers were grown in Australia, for George who has myotubular myopathy.
Sunflower growing season is now over in the UK but if you are in a part of the world about to get its summer, please consider buying a packet of seeds and growing a sunflower to raise awareness of centronuclear and myotubular myopathy, we would love to continue receiving sunflower photos over the winter months.
The Big Sunflower Project is only possible because of the kindness of the organisations who support our work with donations, discounts, funding and publicity. Sunflower seeds for The Big Sunflower Project 2019 were provided by Kings Seeds, who provided 300 packets of seeds at a large discount.
This year 300 places were plotted on the project map which can be seen below – click a sunflower to learn more about the people growing sunflowers in that location.
Over 700 photos were received from 81 participants this year. Every photo received was posted on social media to raise awareness of centronuclear and myotubular myopathy. Photos from the 2019 project can be found below.
Participant stories are incredibly important as they show the reach and impact of the project. If you would like to share your story too, please get in touch.
Harvesting sunflower seeds
Don’t forget that if you have grown a sunflower this year you can save the seeds for growing next year or you can donate these to the project for others to grow. You can learn how to harvest your sunflower seeds below.
There is no charge for project seeds or the cost of postage, the project does 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. If you have donated for your seeds, thank you – if you like to donate you can learn more about how to do this below.
Preparations are already underway for The Big Sunflower project 2020. This is a milestone year for the project as it will be the tenth year we have grown sunflowers to raise awareness of centronuclear and myotubular myopathy. You can read below how the project began.
We have also been able to obtain discounted postage stamps for 2020. Stamps are a major expense for the project and if we were say to send seeds to 300 people during the year, at current prices (83p for a large second class stamp) this would cost £249.00. Stamps for the 2020 project have been purchased with a discount of between 8 – 12% so is a massive saving which we will now be able to use elsewhere – thank you to Mike Abram for all his hard work sorting this for the project.
Next year we will once again be joined by our friends Zusammenstark, growing sunflowers for Emil. You can learn more about their involvement on their website below.
Amy took part in The Big Sunflower Project in 2019. Below she writes about her reasons for taking part.
My name is Amy, I am currently studying Digital Photography at University of Chester. At 16 I was diagnosed with centronuclear myopathy (CNM), Dynamin 2 (DNM2) mutation along with hypermobility.
I decided to take part in The Big Sunflower Project to be more involved in the community, as it is nice to have people that understand emotions and issues that go along with the condition. The sunflower project seemed like a great, proactive way to raise awareness about the condition that I myself and people I love have (people who I have only been able to meet through online community and pages that have been set up e.g. the sunflower project, CNM and myotubular page).
Documenting my sunflowers growth and creating little updates felt like almost a way to give something back to the amazing people that run the pages, websites and projects for our community. I wanted to take part in The Big Sunflower Project because without these pages I would not have been able to meet so many amazing people around the world and probably would have still felt very isolated and scared by my condition.
The Neuromuscular Centre is the Centre of Excellence for people with neuromuscular conditions. Based in Cheshire the charity supports people across the UK and sometimes further afield, providing physiotherapy, training and employment. Below Alison Evans from the centre writes about their involvement in The Big Sunflower Project during 2018.
Sunflower fever swept across the NeuroMuscular Centre (NMC) this summer! We have loved having the bright, showy blooms livening up our grounds (and some of our homes too) but, perhaps more importantly, we have greatly enjoyed working with our friends at The Information Point.
Numerous members of staff took on the challenge to grow sunflowers to help raise awareness for centronuclear myopathy and myotubular myopathy. We took over spaces in the NMC garden, the car park, the meadow, the greenhouse and even our Sales Manager’s bedroom, to cultivate our plants and turn our vista sunshine yellow.
As a centre of excellence for people with neuromuscular conditions, we were eager to help The Information Point raise awareness. Like Toni, we believe in the power of community. Everyone can flourish given the correct support and guidance and we think that the sunflowers are a fabulous metaphor for this.
At the NMC, we offer physiotherapy, support, training and employment to people with muscular dystrophy. We believe that peer to peer support is a key part of everyone’s wellbeing and that raising awareness of all neuromuscular conditions is an important baseline.
NMC Design+Print is a graphic design and printing company at the heart of the NMC; predominantly staffed, and managed by, people with MD. We provide a friendly, professional and creative service with a healthy serving of social value! The profits we make go toward the running costs of the NMC, so by working with us you also support the charity.
Together, we want to inspire young people with disabilities, and to encourage our community to be bold and strive for their dreams. We do this by offering graphic design training, numerous creative workshops, work placements and employment opportunities to people with MD, to help them launch themselves into a career in the creative industry or charity sector.
Partnering with The Information Point has allowed us to pool our audiences across a variety of social media platforms to reach a greater number of people affected by the conditions. It has also helped us to improve our gardening skills, learn more about centronuclear and myotubular myopathies (and as a bonus, we learnt the correct spellings!).
Winter is now drawing in but the project isn’t over yet! Many of us are drying our sunflowers to save the seeds for next year.
The NeuroMuscular Centre again took part in The Big Sunflower Project in 2019, this time using their seeds as part of a seed planting workshop held at the centre. The workshop aimed to encourage staff and service users to plant seeds for growing in the centre’s greenhouse, with the plants either being planted out in the grounds of the centre or sold to raise funds for the centre.
Project sunflower seeds were planted during the workshop as part of a community sunflower growing project over the summer months, with people paying £1 for a sunflower seed and a pot to support the work of the centre.
Entrants were encouraged to share photos of their sunflowers and certificates and were awarded for the tallest sunflower but also the sunflower with the most sunflowers. the first sunflower to bloom and the sunflower that flowered in the face of adversity, having tried to grow around the cycle racks at the front of the building.
In September, the centre’s ‘smallest’ tallest sunflower grower was delighted to receive a certificate, together with a prize of garden tools and a packet of seeds, so she could continue gardening.
To learn more about the work of the Neuromuscular Centre and NMC Design and Print, take a look at the short film below.
In 2019 The Big Sunflower Project was contacted by Leanne, a Can Do Sport Programme Coordinator at Leonard Cheshire, who was creating an accessible garden and outdoor classroom at Marketfield School in Colchester, as part of a programme called ‘Can Do Sport’, an activity-based skills course for young people aged up to 35 years old with disabilities, mental health issues or long-term health conditions.
Leanne explained that Can Do Sport is about encouraging young people to become more active and lead healthy lifestyles (gardening included). Participants do 16 hours and when achieving a number of outcomes they can earn a City and Guilds endorsed certificate.
The Marketfield School project was funded by the National Garden Scheme, which each year chooses a number of charities to donate to and Leonard Cheshire had been fortunate to receive some money to create a courtyard garden at the school.
Leanne says ‘The sunflowers were grown on a windowsill and then planted outside against a sunny wall. It was really nice and everyone gave their sunflower a name. Growing sunflowers for The Big Sunflower Project was a great way for pupils to learn about gardening and also to help raise awareness of centronuclear and myotubular myopathy.’
Laceymay and her sons took part in The Big Sunflower Project for the first time in 2019. Below she writes about their experience of growing sunflowers.
So this year was our first year growing sunflowers. We were very lucky to receive some normal and some dwarf sunflower seeds. We got these absolutely free of charge through the post.
Me and my two boys aged 2 1/2 and 1 1/2 took part this year in our back garden. Both my boys seem to love being in the garden and have previously planted other things so I thought this would be perfect.
I let the boys plant their own seeds – they each planted a tall sun flower and I planted a dwarf sunflower so we could see the difference. They were both very excited to see them grow. For the first maybe six to eight weeks we kept them inside, until they were strong enough to go outside, to be replanted into bigger pots to grow and flourish.
The boys watered them daily and once they were outside there was no stopping them. The tall sunflowers flowered first, they were beautiful and the boys were both so pleased because we managed to get them both just over four feet. Not bad for our first attempt. Then maybe three weeks after the big ones had been harvested and died out, the dwarf opened up and it was stunning.
Not only have these sunflowers been great for me and the boys to get more active outside, they have also brought a lot more wildlife to the garden as well this year, since having the sunflowers we’ve had an increase in the number of butterflies and bees that visit our garden which is lovely to see.
We are very much looking forward to taking part again next year and also getting some others involved with us. Thank you for letting us be a part of this amazing event and I hope we can spread the word and get this recognised.