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.

Sunflower grown by Amy.

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.

NeuroMuscular Centre

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.

Chloe with her tallest sunflower certificate.

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.


Neuromuscular Centre | NMC Design and Print
NMC Training and Development

Marketfield School

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.

Marketfield School courtyard garden

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 boys

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.

Sunflower grown by Laceymay and her boys.

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.


Tinsley Meadows Primary Academy

We heard about The Big Sunflower Project early in 2018 and were delighted when our application for seeds and to take part in the project was successful.

Pupils at Tinsley Meadows with their sunflower seeds.

We were excited to receive the seeds and couldn’t wait to get planting.

Planting sunflowers at Tinsley Meadows.

We each planted our own sunflower and enjoyed observing and caring for them at school.

Caring for sunflowers at Tinsley Meadows.

When our sunflowers had grown a little taller, we took them home.

Sunflowers at Tinsley Meadows.

We enjoyed drawing and writing about them at home with our grown-ups. We also painted sunflower pictures and talked about how seeds grow.

Painting sunflowers at Tinsley Meadows.

Logan enthusiastically cared for his sunflower at home. He shared lots of photographs of him looking after his sunflower as it grew taller.

Logan with sunflowers.

We can’t wait to take part in the 2019 Big Sunflower Project this year and are looking forward to growing sunflowers and raising awareness of centronuclear and myotubular myopathy once again.

The Big Sunflower Project 2019

Seed distribution for The Big Sunflower Project will begin again in early 2019. Seeds for the 2019 project have been obtained from Kings Seeds at a large discounted price, with money donated to the project in 2018. Seeds have also been donated by Katrin Wurmitsch-Hohenwarter and her friends and family in Austria, who grew sunflowers during the 2018 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.

Sunflower seeds from Kings seeds.

300 packets of seeds containing 50 seeds will be distributed in 2019 – 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 ensure the future of the project.

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.

Marius and sunflowers.

Please note, 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.

Photos submitted to the project are shared here on the project social media pages and also 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).

The Big Sunflower Project logo.

A year in the life: 19 December 2018

Earlier this year, I decided to write about my sunflower growing year. It could have been a very dull series of posts but the UK had a fabulous hot summer, my sunflowers grew amazingly well, there was much to write about and many photos to share … I love it when a plan comes together.

To end my ‘year in the life’ posts I thought I would write a short review of the year and highlight a few of my favourite things from 2018 (soon you won’t be able to get away from reviews of the year, so I’m getting mine in first). If you haven’t seen it already, please also take a look at the project end of year report.

2018 was the eighth year of the project. The seeds that were sent to participants were purchased from Thompson and Morgan, at a large discounted price, with money donated to the project in 2017. Seed donations were also received from Mark Davies Seeds, Just Seed, The Real Seed Collection and L G Seeds.  Support such as this is crucial to the survival of the project and I really cannot say thank you enough to everyone for their generosity, which has enabled the project to continue as long as it has.

The aim of The Big Sunflower Project is to raise awareness of the rare neuromuscular conditions known as centronuclear and myotubular myopathy, so I was over the moon to have people once again growing sunflowers in memory of Emil, who was diagnosed with myotubular myopathy and passed away in 2016.  You can read more about Emil here on the project website.

Emil's birthday invite.

This year the project also welcomed the family and friends of Marius in Austria. An email arrived in early April requesting seeds, explaining that Marius was born in August 2017 and diagnosed with myotubular myopathy. The family wanted to grow sunflowers in the hope that Marius would see them when he  hopefully came home from hospital.

Marius and sunflowers.

Seeds from Austria.

They went on to grow sunflowers, take photos and save their sunflower seeds, which will now be distributed to participants in The Big Sunflower Project 2019. You can view photos of the sunflowers that were grown in Austria on the project Flickr page.

This year the NeuroMuscular Centre in Cheshire also participated and were enthusiastic supporters on social media. Based in Cheshire, the charity supports people across the UK and sometimes further afield, providing physiotherapy, training and employment to people with muscular dystrophy. I was delighted to have them take part and to be able to share their story on the project website.


In July, I attended the Myotubular Trust and Zusammen Stark! family conference in London for people affected by centronuclear and myotubular myopathy. You can read about the conference below.

It was amazing to hear about the incredible advances in research into centronuclear and myotubular myopathy but also really quite lovely to walk into the venue and see balloon sunflowers everywhere. Thank you Myotubular Trust and Zusammen Stark! it was a truly thoughtful thing to do and my little heart wanted to burst at the sight of them.

Balloon sunflower

Balloon sunflowers

Balloon sunflowers.

Finally, this year, I was so happy to have my old school, Oldfield Primary School in Chester, take part in the project.  The school is just a hop, skip and a jump from my childhood home. It is also where I went as a brownie and girl guide and this year my old guide leader, now a Governor at another primary school in Cheshire, also participated in the project with her school. It was particularly special to have both schools involved and to see how well their sunflowers grew.

Sunflower grown by pupil at Oldfield primary school.
Sunflowers grown at Westminster Primary School, Ellesmere Port.

So, just a few of my favourite things from The Big Sunflower Project 2018 but thank you to everyone who took part in the project this year.

Seed distribution for the 2019 project will begin in early 2019 and I look forward to growing sunflowers again with anyone who wants to join me then.