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 and 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, we would love to continue receiving sunflower photos over the 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 who 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 every one 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 seeds will shortly be arriving from Tamar Organics and Grow Seed. 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.

US MTM-CNM Family Conference 2019

The next MTM-CNM family conference will be held in St Louis, Missouri, in July 2019. The conference will mark 10 years since the first bi-annual conference was held in Houston, Texas in 2009.

The conference will provide the chance for families to hear directly from medical professionals, clinicians, researchers and pharma industry members, about the most up to date research and care practices, in one place, for one weekend, as well as providing the opportunity for families to directly collaborate with medical professionals, engage in ongoing research and meet with other families affected by myotubular myopathy.

Further information about the conference can be found in the MTM-Family Connection newsletter below.

US MTM-CNM conference

MTM-CNM Family Conference logos.

MTM-CNM Family Connection conference announcement 

 

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

Watering sunflowers

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 a sunflower

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 in Germany

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 in Austria

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.