Tag: muscle disease

Laceymay and boys

thebigsunflowerproject

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.

 

The Big Sunflower Project 2019 (mid year report)

thebigsunflowerproject

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.

 

The Big Sunflower Project 2018 (end of year report)

thebigsunflowerproject

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.

Linda

thebigsunflowerproject

Linda lives in Hereford and has been growing sunflowers with The Big Sunflower Project since 2016.

This has been my third year  growing sunflowers for The Big Sunflower Project. My daughter  Georgina was born 30 years ago with centronuclear/myotubular myopathy, so taking part and raising awareness is something that is very close to our family.

Last year I saved the seeds as I was so impressed with the flowers and this year I started early hoping to have flowers for longer but the first batch of very healthy plants I put out were over night eaten completely by slugs.

So, very disappointed I stared again thinking I was going to be to late but to my surprise and considering it was such a hot summer, the sunflowers have been wonderful and are still flowering in November. I have been surprised that the large flowers, once they had finished flowering and were removed to save for next year (but not removing the stems), are still flowering too.

I think I started with four different types of sunflowers, so in the sales I have bought more seeds. Never knew there were so many different types of sunflowers, so I am looking forward to taking part in The Big  Sunflower Project 2019 and growing as many types as I can.

Sunflower grown by Linda.

Mike

thebigsunflowerproject

Mike has taken part in The Big Sunflower Project since 2016 and has supported the project on his blog Flighty’s Plot since then.

In 2017 Mike wrote:

I don’t have a garden just a half-plot allotment, which is only a few minutes walk away from home, where I grow soft fruit, vegetables and lots of flowers including sunflowers.

One of the varieties I have grown was the knee-high Music Box which did really well so I’ll be growing it again. As I don’t have a greenhouse I sowed the seeds in small pots on the windowsill at home. When I planted them out on the plot I sprinkled some organic slug pellets around them. The plants produced numerous colourful flowers over a long period and didn’t need staking.

mike

It’s said that sunflowers bring out the happy child in everyone. They certainly do with me, which is why I grow them as one of my favourite flowers and I’m happy to support this good cause, which includes linking to this website on my blog.

In 2018 Mike wrote:

As much as I would like to grow impressively tall sunflowers my allotment is in the middle of a rather exposed site where wind damage to taller plants can occur, even when they’re staked and tied.

The past couple of years I’ve grown the knee-high sunflowers Music Box, which only grow to around 30″/75 cm and generally do well.  If you’re hoping to take part and only grow in containers then these are an ideal variety. They have numerous flowers in various colours – usually yellow, some bi-coloured red/yellow and occasionally lemon – all with dark centres.

Musicbox sunflowers

I grow them in an area I call sunflower corner where they flower from early July well into autumn. As with all the flowers that I grow they are attractive to bees and butterflies. I save some seed heads and leave others for the birds or to self-seed. This year I’ve saved a lot of these seeds to donate to Toni to send to participants in The Big Sunflower Project 2019.

In 2019 Mike wrote

I had a good year on my allotment with one of the highlights being the sunflowers which did really well.  As usual I grew the knee-high variety Music Box which got rather overshadowed by taller ones so I’ll be growing them in a separate area next year.   The taller Ring of Fire not only did well but four blooms that I picked and entered in one of the floral classes at my horticultural society’s annual show in early September won a first prize, much to my surprise and delight.

I collected and sorted lots of seeds from both of these varieties which I’ve sent to Toni for use in next years project.  I’ll be growing them again along with the new to me variety Sonja which grows to around three to four feet with plenty of four inch dark-centred blooms which are golden-orange.

It never ceases to amaze me how sunflower seeds planted in the spring germinate and grow in just a few months, with the wonderful flowers not only making us smile but also providing food for bees, birds and butterflies.

Sunflower

A year in the life: 20 October 2018

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.

Sunflowers

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.

Red sunflower

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.

Orange sunflower

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.

Sunflower heads

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

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.

Voting closes on 12 October 2018.

 

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