centronuclear myopathies – Page 3 – The Big Sunflower Project

A year in the life: 20 October 2018

October 20, 2018January 9, 2020 thebigsunflowerproject

It’s late October and today, for possibly the last time this year, I am writing this sat in the garden (albeit bundled up in a big cardigan). It’s Saturday, the sun is shining and the sky is blue, so I’m pretending like it’s summer.

Sunflowers

This year many of the seeds I planted germinated. I planted my sunflowers out anywhere around the garden where I found a space and from early August was rewarded with huge yellow, red and orange flowers all over the place. The sunflowers here this year were nothing short of magnificent. Some of them I thought would never flower – like a well known beanstalk, they just grew and grew and grew.

And although not quite the sight they were, there are still sunflowers in bloom today and a couple of sunflowers still to flower – whether these can survive the night time frosts which are surely on the way remains to be seen but right now they are giving it a good go.

With it being such a lovely day today, I have sunflower heads full of seeds drying out in the sun. My growing success this year means I should have a fair few seeds for growing next year. However, earlier this year I also applied to the Skipton Building Society Grassroots Giving scheme, for a £500 donation, with the aim of securing the future of the project for a further year.

The project was successful in being shortlisted for the third time and it is lovely simply for the project to be recognised, however, winning a donation would be a huge help in funding the increasing cost of seeds and postage.

Winners of the donation are decided by public vote, so support from project sunflower growers and those affected by centronuclear and myotubular myopathy is vital. If you voted, thank you so very much. Winners will be announced on 5 November.

2018 was the eighth year of the project. This year more than 850 sunflower photos were received and sunflowers were grown in the UK, Europe and the USA. Sunflower growing season in this part of the world is now almost over, so all that remains is to say a huge thank you to everyone who helped raise awareness of centronuclear and myotubular myopathy by taking part in project again this year and sharing their beautiful photos.

And if you are in a part of the world which is just about to get its summer, please consider picking up the baton and taking part. I can think of nothing better than receiving sunflower photos from foreign climes during the cold dark days which are to come.

Grassroots Giving 2018

September 5, 2018September 5, 2018 thebigsunflowerproject

The Big Sunflower Project has been shortlisted for Grassroots Giving 2018 to receive a donation of £500. Over 740 applications were received and 377 groups have now been shortlisted.

Funding such as this is crucial to The Big Sunflower Project continuing and the winners will be decided by public vote, so if you like what we do please vote below for us to win.

Grassroots Giving 2018

Voting closes on 12 October 2018.

A year in the life: 25 August 2018

August 25, 2018January 9, 2020 thebigsunflowerproject

The first of my giant sunflowers started to bloom in early August and the second the day after. I would have had a sunflower earlier but windy weather at the end of July saw the first one off just as the flower began to open.

Giant sunflower.

After months of nurturing they both flowered in a direction where I could not see them easily, choosing to look out over the street, instead of the garden but both plants had many flower buds and the later flowers are being more obliging.

Giant sunflower.

This year my success rate has been high. I had some seeds that didn’t germinate and a few plants have been lost to the weather but dotted around the garden today I have around 15 large variety sunflowers, some growing to dizzying heights and my dwarf sunflowers are still flowering too.

The last few weeks have seen sunflower photos arriving almost every day from across the UK but also from Europe and the USA. This time of year is almost like a second Christmas or birthday, each sunflower a gift which is then shared on the project social media pages, so helping raise awareness of centronuclear and myotubular myopathy with its beauty. Currently, the project has received over 600 photos from 97 participants.

Now in late August, there is a chill in the air in the mornings but this afternoon has been warm and sunny and I chopped down the first of the giant sunflower heads that had started to go over. Strangely, it didn’t feel bad doing this, the flowers were as big as my hand (the leaves even bigger) and are bursting full of seeds – once the seeds have dried out, it will be possible to plant them next year. Dead heading should encourage the other buds into bloom too. Also I still have many sunflowers to flower and the ones that are in bloom already, have today looked amazing sunning themselves against the back drop of a very blue sky, so I am looking forward to September in the garden.

A year in the life: 25 July 2018

July 25, 2018July 25, 2018 thebigsunflowerproject

It’s getting towards the end of July and all but one of my dwarf sunflowers, which was planted later than the others, are now in bloom. They are around two foot high with many flowers and are loving the proper summer we are having this year. The bees and butterflies think they are in sunflower heaven and it is really quite joyous to watch them going about their business each day.

Dwarf sunflower.

I am loving the weather too but I am spending a lot of time watering. The neighbours I am sure, think the crazy watering woman is at it again, every time they see me with my watering can but when plants are in pots or under the roof line, the rain does not get to them like they need and even a heavy rain shower for an hour doesn’t do much for those planted in the borders after weeks of intense sun.

The larger varieties are coming on nicely too. Some of them are making a bid to expand their horizons and will soon be peering over the garden fence at passersby. Many of them now have flower buds but no actual flowers yet, so I am giving them tomato feed for encouragement.

Sunflowers

As usual when I planted my sunflowers, I tagged them so I knew what they were but despite my best intentions the names have mostly washed away, so in a lot of cases, it is going to be sunflower surprise again.

Mercifully the slugs and snails have kept their distance this year, although I did find the biggest slug wedged between a flower bud and a cane after some rain recently. Sadly it wasn’t willing to listen to reason. We had a disagreement as I proceeded to try and evict it. I won but … ugh. However, said sunflower seems to be doing okay, despite the best efforts of the slug to eat it.

Dwarf sunflowers.

I am hoping to have another go at harvesting seeds this year. Last year, although the project did receive some seed donations, I had to purchase sunflower seeds for the first time since the project began, which meant less money was available for the admin costs of the project. So as flowers fade, it’s off with their heads, in the hope that the seeds will dry out and can be used next year. You can read about how to harvest seeds on this website.

How to harvest sunflower seeds

If you decide to have a go too and would like to share some of your bounty with The Big Sunflower Project 2019, please get in touch.

Sunflower heads drying out in the sun.

The Big Sunflower Project 2018 (mid year report)

June 23, 2018November 10, 2018 thebigsunflowerproject

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:

Chester Soup Kitchen Charity (disbursed by Chester Voluntary Action)
The Co-Operative Bank Customer Donation Fund

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.

Local Charities Day

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.

Stories from our sunflower growers

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.

Resources

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.