The Big Sunflower Project (mid year report)

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.

Dwarf sunflowers growing in wellington boots.

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.

Sunflowers growing at Westminster Primary School.

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.

Free seeds and plants.

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.

Jen and Holger planting sunflower seeds.

ZNM-Zusammenstark! e.v. 

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.

Bear watering sunflowers.

In the news

The project has received some lovely publicity this year which can be read below and we are incredibly grateful to those who have taken the time to write about what we do.

Sunflowers growing at Spitalfields Crypt.

Resources

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.

Make a donation

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.

Our friends

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.

Planting sunflower seeds in Birkenhead.

Further information

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.

 

The Big Sunflower Project 2019 (end of year report)

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. 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 – it would be lovely to continue receiving sunflower photos over the UK winter months.

Sunflowers grown in Harpenden during The Big Sunflower Project 2019.

The Big Sunflower Project is only possible because of the kindness of the organisations that 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.  Seeds were also donated by people who harvested seeds from sunflowers they grew during the 2018 project – thank you Katrin, Mike and the University of Leicester Social Impact team. In addition the project received a £200 donation from Cheshire West Voluntary Action, a £150 donation from Sanctuary Housing and a donation of stamps from project participant Sue.

The Big Sunflower Project was also recently featured in the Liverpool Echo and we are grateful to Semble and the Liverpool Echo for making this happen. You can read the article below.

Sunflower grown in Leeds during The Big Sunflower Project 2019.

Project map

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.

Photos

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.

Sunflower grown in Chester during The Big Sunflower Project 2019.

Stories

Thank you to everyone who shared their story with the project this year. The new stories 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.

Sunflower grown in Chester during The Big Sunflower Project 2019.

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.

Sunflower grown in Leeds during The Big Sunflower Project 2019.

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.

The Big Sunflower Project 2020

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.

100 packets of seeds have already been donated by Thompson and Morgan and harvested seeds from 2019 project participants are also promised.

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.

Sunflowers grown in Germany during The Big Sunflower Project 2019.

Further information

Further information about the project can be found on here on the project website and on the project social media pages.

Seed distribution for The Big Sunflower Project will begin again in early 2020. An announcement will be made on social media advising when seed applications are once again being accepted.

The Big Sunflower Project 2019 (mid year report)

2019 is the ninth year of The Big Sunflower Project. This year over 300 packets of seeds have been sent across the UK and to The Netherlands, Germany, Sweden, Lithuania and Germany. For the third time the project is being 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 have been grown in Australia for George who has myotubular myopathy, meaning the project has received some beautiful sunflower photos this year already.

Sunflower grown in Australia.

About The Big Sunflower Project

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.

Planting sunflower seeds.

How is the project funded

The Big Sunflower Project is only possible because of the kindness of those who support our work with donations, discounts and funding. Sunflower seeds for The Big Sunflower Project 2019 have been provided by Kings Seeds, who provided 300 packets of seeds at a large discount. Seeds have also be donated by people who grew sunflowers during the 2018 project and harvested the seeds – thank you Katrin, Mike and the University of Leicester Social Impact team. In addition the project has received a £200 donation from Chester West Voluntary Action.

Project map

283 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.

Resources

Information about how to grow sunflowers can be found on the project website.

And 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.

Newly planted sunflowers.

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 would like to donate, you can learn more about how to do this below.

Planting sunflowers in Germany.

Further information

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.

 

The Big Sunflower Project 2017

2017 was the seventh year of The Big Sunflower Project – participants included schools, community groups and charities, as well as those affected by centronuclear and myotubular myopathy, including many people who grew sunflowers in memory of Emil, who was diagnosed with myotubular myopathy and sadly passed away in 2016.

The Big Sunflower Project 2017 was possible because of seed donations from the following organisations who all donated seeds for free.

Also the Skipton Building Society who awarded the project £500 as part of their Grassroots Giving initiative. 

Project map

Project participants were plotted on the project map – click a sunflower to learn who grew sunflowers in that location.

Project photos and stories

The aim of The Big Sunflower Project is to raise awareness of centronuclear and myotubular myopathy and the project does this, firstly by giving away sunflower seeds but also by sharing the photos and stories of project participants. Photos were received from 99 participants and these can be seen on the project Flickr and Instagram pages.

The project also received stories from some of our 2017 participants and these can be read below.

Sunflowers for Emil

This year many people took part in The Big Sunflower Project to remember Emil who was diagnosed with myotubular myopathy and sadly passed away in 2016.

On 19 February 2017, Emil would have turned three and his parents wanted to celebrate this special date with all their friends and family around the world by joining The Big Sunflower Project. The idea was to plant sunflower seeds to think about Emil and to raise awareness of centronuclear and  myotubular myopathy, so sunflower seeds were planted in memory of Emil at a birthday breakfast and at the nursery where he attended.

As the summer progressed, the sunflowers grew and bloomed around the world in the UK, Germany, Spain, Italy, Bavaria, the USA, Ecuador and the United Arab Emirates. What a beautiful way to remember a young life.

Further information

For further information about the project visit The Big Sunflower Project website.

Sunflowers for Emil

The Big Sunflower Project is an inititative of The Information Point which aims to raise awareness of centronuclear and myotubular myopathy by asking people to grow a sunflower and share their photos. 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. Emil’s mother, Jen Bilbao, told The Information Point about remembering Emil.

Sunflowers for Emil

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. Last year on May, 8th, he sadly passed away. He was only two.

Emil drawing

On February, 19th, 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, so sunflower seeds were planted in memory of Emil at a birthday breakfast and at the nursery where he attended.

The results were just amazing. Sunflowers are blooming right now 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.


Further information

 

Conrad and the sunflower

This story first appeared in the Information Point newsletter Our World in 2013, after an email arrived out of the blue. It told a touching tale of a chid born with myotubular myopathy and a sunflower. Thank you Emma for taking the time to write, your kind words and for sharing lovely story with the world.

After trying for some time, last July, my husband and I found out I was pregnant. Earlier the same year my husband and I had some stumps ground out of our lawn leaving a few substantial piles of dirt in the yard. In one of the piles a sunflower grew – seeming to come from nowhere. We enjoyed the sunflower all summer and into the fall.

When our precious Conrad was born he was not breathing and was floppy. Long story short, after genetic testing we learned that Conrad had myotubular myopathy.

In my frantic search for information about Conrad’s condition, I came across the Information Point and read about the Sunflower Project. In that moment I knew that our mysterious sunflower was God’s way of telling us that He already knew what Conrad had and that he was preparing the way for Conrad’s life even while he was being knit together in my womb. Even when it seems that nothing is fair and the world does not make sense, God is in control and He has a plan for our darling little boy.

I am learning already that boys with MTM and the families who love them are very special people. Thank you so very much for all the work you have done to raise awareness about centronuclear and myotubular myopathy and for being here when I and my family needed you.