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The Big Sunflower Project 2018 (mid year report)

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2018 is the eighth year of The Big Sunflower Project. Seed distribution began in January and seeds have once again been sent to places across the UK. Sunflowers are also being grown in Germany, The Netherlands, Austria, Croatia, the USA, New Zealand and Costa Rica and for the second time the project is being joined by many people growing sunflowers in memory of Emil, who was diagnosed with myotubular myopathy and sadly passed away in 2016.

Sunflower seedlings in Shetland.

The Big Sunflower Project is only possible because of the kindness of the organisations who support our work with donations, discounts and funding. Sunflower seeds for The Big Sunflower Project 2018 have been provided by the following organisations.

In addition the project received funding from:

The aim of The Big Sunflower Project

The aim of The Big Sunflower Project is to raise awareness of the rare neuromuscular conditions known as centronuclear and myotubular myopathy. The project raises awareness by sending seeds to people who have never heard of the conditions and requesting photos and stories in return, which are posted online, again raising awareness of the conditions.

Project map

309 places have now been plotted on the project map which can be seen below – click a sunflower to learn who is growing sunflowers in that location. 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 too.

Photos

So far this year 146 photos have been received from 46 participants. Photos submitted to the project are shared in the Information Point newsletter and on the project social media pages which raises awareness of centronuclear and myotubular myopathy.

Don’t forget when sharing your photos to advise where the sunflowers are being grown and when sharing the photos on social media use #TheBigSunflowerProject.

Local Charities Day

Sometimes the photos are used in applications for grants and funding such as that described above or where an opportunity arises to raise awareness of the project, such as on Local Charities Day, an initiative of the Department of Digital, Media, Culture and Sport, which helped raise the profile of the project at a national level.

Stories

The project website now has a large collection of stories from past participants – if you would like to share your story too, please get in touch.

Resources

The resources area of the project website was updated earlier this year. 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 this area of the website. You will also find resources for teaching children and to start conversations about equality and diversity.

Watering sunflowers in Chester.

Make a donation

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.

Growing sunflowers at Tinsley Meadows Primary Academy.

Further information

Further information about the project can be found on The Big Sunflower Project website and on social media.

 

A year in the life: 6 May 2018

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It is now almost two months since I planted my dwarf sunflower seeds. Being a dwarf variety the plants have been growing happily on the kitchen windowsill for most of this time with the occasional visit outside, to prepare them for being permanently out in the  big wide world. Six of the eight seeds I planted grew fine and I planted a couple more a few weeks after the initial planting to make up for the two that didn’t grow.

Each year it never ceases to amaze me how I can plant my seeds on the same day at the same time but how they grow at different rates. There are always the high achievers racing ahead, while others, take their time, wondering what all the fuss is about. However, overall what I have learned during the time I have been growing sunflowers, is that they flower in their own sweet time. In my case last year, this was November and while I have had sunflowers bloom during the winter months before, they have usually been second flowerings, so I am hoping for a better showing this year.

Dwarf sunflowers

Over the last few days, after a very long winter, it seems like everything in the garden is coming back to life and I can almost see things growing before my eyes, so today I transferred my dwarf sunflowers outside. Now even the biggest plants look tiny in their new  homes but the weather is set to be hot and sunny for a few days and I wanted to make the most of it. Hopefully I am giving them a good start.

Presently sat in an area of the garden which gets full sun all day, none of the plants appear to be sulking about being re-housed but later I will be putting copper rings around them to keep the slugs and snails at bay and will move them into the shed overnight.

In previous years I have found using the cut off bottoms of plastic milk bottles to be quite effective at protecting my sunflowers but last year they were not enough to protect my plants from a mass invasion of slugs and snails that arrived in the garden during a wet spell, so I invested in copper rings and will be using these from the start this year.

Dwarf sunflowers

Since planting my dwarf sunflowers I have also planted some giant sunflower seeds and these are also growing fine indoors but I am going to let them get a bit bigger before I pot them out, as currently they look as if they would make a good meal for a hungry slugs and snails.

And now the dwarf sunflowers have moved out of the house, I have been able to sow a few more large varieties indoors – Sunburst Mixed and Autumn Time, neither of which I have grown before and Copper Queen which I have. Watered and sat behind a hot window, hopefully it won’t be too long  before I have some more sunflowers growing.

Giant sunflowers

Frank: South Africa

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The Big Sunflower Project welcomes participation from around the world. Sadly, due to import and export rules, we are unable to send seeds outside of Europe but that doesn’t stop people joining in, with sunflowers having been grown in many places across USA, Ecuador and Dubai.

Sunflowers

In early 2018, the project received a lovely email and photos from Frank in South Africa – Frank is diagnosed with the dominant form of centronuclear myopathy which made the email all the more special.

Frank grew the sunflowers in his lovely garden in Durban and they were subsequently eaten by the local troop of Vervet moneys, making their daily trek across the yard.

Vervet monkeyVervet monkeysVervet monkeys

A year in the life: 10 March 2018

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2018 marks the eighth year I have been growing sunflowers and this year I thought I would try and record my sunflower growing.

Seed distribution for The Big Sunflower Project 2018 began in January and there are now 252 places plotted on the project map, with seeds having been posted to destinations in the UK and Europe, to people affected by centronuclear and myotubular myopathy, charities, community groups, good causes and more.

There isn’t much in the way of planting going on yet – today is Saturday 10 March and this time last week the UK had ground to a halt because of heavy snow and freezing weather conditions. Winter 2017/2018 has been the coldest winter we have had in the UK for a number of years and there has been ice and snow on an off since before Christmas.

I tried planting some seeds in my shed getting on for a month ago now but there’s nothing doing. To be honest, I wouldn’t want to grow either given the weather we have had but it got me out the house for a short time, on a more mild day.

Solar Flash dwarf sunflower

However, today I have started in earnest and planted eight dwarf sunflower seeds. They are a variety call Solar Flash (see photo above of one I grew earlier) which I have planted for a number of years and they will grow to around two or three foot.

The good thing about these is that they will grow happily in the house for quite some time and because they are a dwarf variety, they don’t get leggy like the larger types. If I was to start those now, they would be ready to plant outside in a couple of weeks and as I don’t have a greenhouse, this will be much too early, so I will plant those at a later date.

Preparing to plant sunflowers.

So today pots have been retrieved from under the kitchen sink and filled with compost. I had a bit of help from some new friends found in a garden centre yesterday. To be honest though they weren’t much help but made for pretty photos.

A single seed was planted in each pot and watered. This year I am using ice cream sticks to label my plants with the name of the sunflower and the date it was planted rather than buying something expensive that does the same thing.

I label my plants every year as I grow different varieties but if all my plants retain the correct label or any label at all later in the year, it will be a miracle. I am using sticks from Magnum ice creams (I highly recommend the double raspberry and honeycomb ice creams) but other brands of ice cream are available.

Ice cream sticks for labeling sunflowers.Sunflower seeds planted and labelled.Sunflower seeds planted and labelled.

Now it is a waiting game … over the next couple of weeks I will give the seeds warmth, light, water and words of encouragement and hopefully, towards the end of March will be rewarded with some sunflower seedlings.

More photos

Suspension of seed distribution

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This week The Big Sunflower Project has been promoted on the Gratisfaction, Wow Free Stuff, Latest Deals, Offer Oasis and Free Stuff Search websites and their social media pages. The project has also been included in e-newsletters that these organisations have sent to their subscribers.

None of these organisations asked before doing this, resulting in an overwhelming number of seeds requests being received and we have been forced to suspend seed distribution for the time being. This is the second year that Gratisfaction and Wow Free Stuff have promoted the project without asking and caused seed distribution to stop.

All the organisations have been contacted and asked to remove the information from their websites and social media. Gratisfaction have removed the information from their website but are marking requests on their Facebook page as spam. Wow Free Stuff, Free Stuff Search, Latest Deals and Offer Oasis have not responded. And e-newsletters, once sent, can not be recalled. Sadly as a result of these promotions, it will be impossible to send seeds to everyone who has applied.

The Big Sunflower Project is an independent non profit organisation which relies on funding and donations to keep going – the project is not associated with any freebie websites and project seeds are not freebies or free samples as has been promoted.

The aim of The Big Sunflower Project is to raise awareness of rare neuromuscular conditions known as centronuclear and myotubular myopathy.  The project raises awareness 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.

There is no charge for seeds or for the cost of postage but  donations are welcomed – these secure the project for  future years and enable seeds to be sent to as many people as possible each year.

Seed distribution will re-commence but at present it is not possible to say when this will be, as it is going to take some considerable time to read through the many emails that have been received.

When distribution begins again, priority will continue to be given to those affected by centronuclear and myotubular myopathy, community groups, good causes and educational establishments and it will be announced on the Facebook project page and The Information Point Twitter page.

Thank you so much everyone for your interest in The Big Sunflower Project. Anyone not chosen to receive sunflower seeds, is still welcome to take part in the project. Please advise if you taking part so you can be included on the project map.

Katie

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Katie lives in Harehills, Leeds and took part in The Big Sunflower Project in 2017. Below she writes about taking part in the project.

I took part in the Big Sunflower Project after a friend I met through a local growing group sent me a link on Facebook. I live in an inner city area of Leeds and although I had dabbled with growing herbs and edibles I’d never really bothered with flowers much and had honestly never grown a sunflower in my entire life. I registered my interest and then one day two little packets of sunflowers came through my letterbox. I felt a wave of excitement, it was miles better post to receive than the usual bills and junk mail we all get these days.

Sunflower

I couldn’t wait to get started so I went out into my little garden and began to gather together my little pots and compost. The three Romanian children next door were looking a bit bored and asked me what I was doing. I invited them to grow a sunflower each. They got stuck in and we planted eight and labelled three with their names which they took them home. Their mother helped care for them but we had mixed success with our first attempt as only a couple germinated (who knew sunflowers could be so tricky?)! We had enough seeds left to have another go and this time more children on the street, who had heard about the sunflowers, wanted to get involved. I’d read somewhere that soaking them overnight could help so we tried that and had much more success the second time round. The Harehills sunflowers seedlings began to grow and grow and grow.

The children on the street started to get very competitive. There was a definite sabotage attempt across the road where a child poured rancid milk on his sister’s sunflower so that one had to go in the bin. For a while the smallest child on the street had the biggest sunflower but once the sunflowers were planted out all that changed. The sunflower belonging to the quiet middle child next door overtook us all, he was so proud. Growing sunflowers had ignited such a passion for gardening in these youngsters and at watering up time each day I had to manage a queue of very eager volunteers. All this gave me the confidence to run a summer holiday workshop outside the local library. They had been given three huge planters and wanted to grow edibles in them, I suggested edible flowers and berries. We held a planting day with children from the centre and some of the young growers from my street and we arranged the plants into three edible faces.

Sunflower

Off the back of all this we had help from the council to install a Community Planter in a grey corner of Harehills which was prone to fly tipping. We decided that it would be nice to grow some pollinator plants in it to attract bees and butterflies to the area. As this is at the top of our street, the children I grew sunflowers with also got involved. This growing army of budding gardeners then went onto plant 5000+ daffodils in the area and now we are trying to get permission to plant some fruit trees in public spaces too. Those little sunflower seeds really worked their magic to increase communication, inspire confidence and start to bring the diverse community of Harehills together again.

Thank you very much for letting us be a part of this, I do hope we’ve helped support you in your mission to raise awareness. We would love to get involved with the project again next year and I’m already thinking about having a pop up workshop at the library to raise awareness of centronuclear and myotubular myopathy and so more children (and adults!) in Harehills can have fun with sunflowers.

 

 

 

Jen and Holger

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In 2017 The Big Sunflower Project was joined by more countries than ever, many of them growing sunflowers in memory of Emil who was diagnosed with myotubular myopathy and sadly passed away in 2016. Below Emil’s mother Jen, writes about remembering Emil.

Emil invite

Emil was a sweet little boy, who loved to look at the leaves of the trees in the forest, to play with his friends in his kindergarten and most of all he loved music. He also happened to have a rare and severe neuromuscular condition called myotubular myopathy (MTM1).

Emil was born three years ago and since then his life has touched the hearts of so many people. On 8 May 2016, he sadly passed away. He was only two.

Emil drawing

On 19 February 2017, Emil would have turned three and my husband and I wanted to celebrate this special date with all our friends and family around the world by joining The Big Sunflower Project. The idea was to seed sunflowers to think about Emil and to raise awareness for myotubular myopathy and the other centronuclear myopathies. Sunflower seeds were planted in memory of Emil at a birthday breakfast and at the nursery where he attended.

The results were just amazing with sunflowers blooming in so many places of this planet, like in California, Massachusetts, Ecuador, England, Italy, United Arab Emirates, Spain and in many cities in Germany. And not just that, the sunflowers have inspired so many people to paint them or make crochet key rings. It is just wonderful to see how many people think about Emil.

Beth

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I am honored to be a part of this project and group. I am the mother of two boys that were born with x-linked myotubular myopathy. My first child Miles Daniel was born full term and needed to be resuscitated at birth. He was placed in the NICU and passed away five hours later. He was a beautiful baby, and as I held him, I mourned all of the things he would never get to do. He was not diagnosed at the time because in 1988, there were no tests or information on this rare disease. The diagnosis at the time from the doctors was “…it was a fluke, these things happen.”

I soon got pregnant again and after an amniocentesis, I found out we were having another boy. “Lightening doesn’t strike twice,” I was told during the course of the pregnancy. However, my intuition told me different. When it was time for me to give birth, I insisted on having a neonatologist in the delivery room, oxygen on hand, and a c-section. Zachary Allen was born and was quickly attended to.

After weeks and weeks of testing and three months in the NICU, Zachary was diagnosed with myotubular myopathy. In reviewing the medical records from Miles’ birth, it was concluded that he too was diagnosed with this disease. Zachary lived a full and beautiful life surrounded with family, friends, and love. He died just before his 7th birthday. There is no one else in my large family that has ever had any problem with this disease.

I adopted two beautiful children and we started a little garden in the back of our house near the window where Zachary looked out of every day. My husband started growing sunflowers because he called them “happy flowers.” We have been growing the sunflowers for almost 10 years. We support Toni and her tireless efforts in bringing awareness to the rare neuromuscular conditions of centronuclear and myotubular myopathy, as well as spreading hope and sunshine all over the world.

beth-2

Meleena (Fulbourn Primary School)

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To be honest I had never heard of The Big Sunflower Project and I had most certainly not heard of centronuclear and myotubular myopathy before 2017.

I received an email through school about taking part – I run a primary school gardening club and I thought “Yes, why not get involved”.  What a great way of combining growing something from seed and explaining how some peoples’ bodies do not grow strong because that have rare disorders.  A few of the children struggled to understand fully the impact of centronuclear and myotubular myopathy (quite complex when you are only 5) but they all grasped how some people are born different and have illnesses or disabilities.

The sunflower seeds arrived in their little brown packet and were eagerly received by the gardening club children.  Some of the children had not grown sunflowers before and to which ends we set about planting up one seed in a pot for each child in the club to take home and nurture.  The home results were mixed!  Some were forgotten and left without water, some were planted out too early and eaten by slugs, some were dug up by cats!  The ones that were given care and attention grew big and strong and added a splash of colour to the children’s garden.

The remaining seeds were broadcast sown in an area that had been dug over in our wild life area.  The seed were added to by a local farmer and the results were quite astounding.  A whole host of sunflowers that Van Gogh would have been pleased to paint.

We subsequently harvested the ripened heads (after explaining that each seed has been formed by an individual flower – wow!) and they are drying in our poly tunnel ready for planting again next year.  We will also pass some of the seeds on to other local schools and hope to raise awareness of The Big Sunflower Project for 2018.

Sunflowers grown at Fulborn Primary School

Nish

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Nish lives in South Oxhey in the UK and took part in The Big Sunflower Project in 2017. Below he writes about taking part in the project.

My favourite flower are sunflowers. I also have a belief that whatever you sow into the ground, you have a chance that it may grow regardless of the external conditions. It just requires a little bit of hard work and a lot of faith.

Sunflowers are significant in Hindu culture too. The symbol of the sunflower is known as the flower of the Sun (Suryar Mukki). The male Hindu Sun God (Surat dada) is worshiped through the sunflower and thus all the female Goddesses also love the sunflower. So in our Hindu culture if you are a devotee of a Hindu Goddess then it is custom to adorn their photo or statue with a sunflower…. it will please the Goddess very much and the male Sun God will provide equal blessings towards your home and family.

Goddess and sunflower
I have grown sunflowers in the past and they have given me so much joy. My family love sunflowers too. Especially my niece and nephew who have witnessed the tallest sunflowers grow in our garden this year. That is all thanks to The Big Sunflower Project.

The sunflowers have been a major blessing to me. Everything I could have wanted and much more. It’s also been quite spiritual for me too. The sunflowers have given me so much happiness especially at times when I’ve been down or at my lowest.

I have thoroughly enjoyed seeing the sunflower varieties bloom this year. The anticipation and excitement has given me so much happiness and sense of youth too. This year has been exceptional.

Thanks to the free seeds from The Big Sunflower Project I have been able to grow exotic and tall sunflowers this year. Two plant pots produced the tallest and highest yield of sunflowers. I am truly humbled and grateful to have been gifted the seeds. I’ll never forget how much happiness you have given me and my family in 2017. Thank you.