The Big Sunflower Project 2019 (mid year report)

2019 is the ninth year of The Big Sunflower Project. This year 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 the project is 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.

Sunflowers being planted 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.

 

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.

Sunflower

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.

The Big Sunflower Project 2018 (end of year report)

2018 was the eighth year of The Big Sunflower Project. Seeds were sent to places across the UK and people also took part in Germany, The Netherlands, Austria, Croatia, the USA, New Zealand and Costa Rica. For the second time the project was also joined by many people growing sunflowers in memory of Emil, who was diagnosed with myotubular myopathy and sadly passed away in 2016. 

Sunflower growing season is now over in the UK but if you have sunflowers waiting to bloom, you can still share your photos. And 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 winter months.

Sunflowers

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 were provided by the following organisations

Growing sunflowers in Shetland.

Grassroots Giving

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.

The Big Sunflower Project recently took part in the Skipton Building Society Grassroots Giving initiative to try and win funds to help with our work. Over 740 applications were received from community groups, clubs and organisations across the UK and we were over the moon to be shortlisted to be one of the groups to win £500.

In order to fairly allocate the 165 pots of money that were up for grabs, the Skipton Building Society asked the public to say who they wanted to receive the funding. 50,000 votes were cast for the shortlisted groups and sadly we did not win. However, if you voted, thank you very much.

The Big Sunflower Project is a non profit group run on a voluntary basis, so funding such as this is crucial to what we do. However we will continue to seek out funding opportunities over the coming months.

Watering sunflowers.

Project map

This year 324 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 800 photos were received from 114 participants this year. Photos from the 2018 project can be found below.

Sunflower

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.

Sunflower

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.

Sunflower

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 sunflower seeds below.

Sunflower

Further information

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