Category: myotubular myopathy

The Big Sunflower Project 2018 (mid year report)

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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:

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.

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.

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.

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.

Growing sunflowers at Tinsley Meadows Primary Academy.

Further information

Further information about the project can be found on The Big Sunflower Project website and on social media.

 

Suspension of seed distribution

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This week The Big Sunflower Project has been promoted on the Gratisfaction, Wow Free Stuff, Latest Deals, Offer Oasis and Free Stuff Search websites and their social media pages. The project has also been included in e-newsletters that these organisations have sent to their subscribers.

None of these organisations asked before doing this, resulting in an overwhelming number of seeds requests being received and we have been forced to suspend seed distribution for the time being. This is the second year that Gratisfaction and Wow Free Stuff have promoted the project without asking and caused seed distribution to stop.

All the organisations have been contacted and asked to remove the information from their websites and social media. Gratisfaction have removed the information from their website but are marking requests on their Facebook page as spam. Wow Free Stuff, Free Stuff Search, Latest Deals and Offer Oasis have not responded. And e-newsletters, once sent, can not be recalled. Sadly as a result of these promotions, it will be impossible to send seeds to everyone who has applied.

The Big Sunflower Project is an independent non profit organisation which relies on funding and donations to keep going – the project is not associated with any freebie websites and project seeds are not freebies or free samples as has been promoted.

The aim of The Big Sunflower Project is to raise awareness of 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 in return. The photos are posted online which again raises awareness of the conditions.

There is no charge for seeds or for the cost of postage but  donations are welcomed – these secure the project for  future years and enable seeds to be sent to as many people as possible each year.

Seed distribution will re-commence but at present it is not possible to say when this will be, as it is going to take some considerable time to read through the many emails that have been received.

When distribution begins again, priority will continue to be given to those affected by centronuclear and myotubular myopathy, community groups, good causes and educational establishments and it will be announced on the Facebook project page and The Information Point Twitter page.

Thank you so much everyone for your interest in The Big Sunflower Project. Anyone not chosen to receive sunflower seeds, is still welcome to take part in the project. Please advise if you taking part so you can be included on the project map.

Jen and Holger

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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. Below Emil’s mother Jen, writes about remembering Emil.

Emil invite

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. On 8 May 2016, he sadly passed away. He was only two.

Emil drawing

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

The results were just amazing with sunflowers blooming 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.

Beth

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I am honored to be a part of this project and group. I am the mother of two boys that were born with x-linked myotubular myopathy. My first child Miles Daniel was born full term and needed to be resuscitated at birth. He was placed in the NICU and passed away five hours later. He was a beautiful baby, and as I held him, I mourned all of the things he would never get to do. He was not diagnosed at the time because in 1988, there were no tests or information on this rare disease. The diagnosis at the time from the doctors was “…it was a fluke, these things happen.”

I soon got pregnant again and after an amniocentesis, I found out we were having another boy. “Lightening doesn’t strike twice,” I was told during the course of the pregnancy. However, my intuition told me different. When it was time for me to give birth, I insisted on having a neonatologist in the delivery room, oxygen on hand, and a c-section. Zachary Allen was born and was quickly attended to.

After weeks and weeks of testing and three months in the NICU, Zachary was diagnosed with myotubular myopathy. In reviewing the medical records from Miles’ birth, it was concluded that he too was diagnosed with this disease. Zachary lived a full and beautiful life surrounded with family, friends, and love. He died just before his 7th birthday. There is no one else in my large family that has ever had any problem with this disease.

I adopted two beautiful children and we started a little garden in the back of our house near the window where Zachary looked out of every day. My husband started growing sunflowers because he called them “happy flowers.” We have been growing the sunflowers for almost 10 years. We support Toni and her tireless efforts in bringing awareness to the rare neuromuscular conditions of centronuclear and myotubular myopathy, as well as spreading hope and sunshine all over the world.

beth-2

Donations to The Big Sunflower Project

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This week, we have become aware that some people have been trying to donate to The Big Sunflower Project but these donations have been going instead to an organisation called 38 Degrees.

After an investigation, 38 Degrees traced one of the donor PayPal reference numbers to their Bee Seeds Campaign and specifically to the donation page for this campaign.

The donation has now been refunded and the donor has been notified by 38 Degrees that they now know this was not intended for them. It is hoped the other donations will be refunded shortly.

38 Degrees have also taken down their order page which was posted on the WOW Free Stuff website – this appears to be where confusion has arisen, as both the 38 Degrees campaign and The Big Sunflower Project were featured there at the same time.

If you think you have donated to The Big Sunflower Project but have not received your sunflower seeds, you may have been affected too and should check your PayPal receipt to see where your donation has gone.

If you find you have donated to 38 Degrees, you should contact them quoting The Big Sunflower Project in any correspondence. You will need to provide a screen shot showing your donation receipt and the reference number for your donation, in order to receive a refund.

Please note, if you are wanting to donate to The Big Sunflower Project, there are only two ways to do this, either:

The Big Sunflower Project will not receive donations that use any alternative donation facility, so donors will not receive sunflower seeds from The Big Sunflower Project. However, the project is happy to send seeds to anyone who donates in either of the ways detailed above.

Arlene: Germany

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In May 2016 ZNM-together strong e.V. and the Myotubular Trust held a three day Family Conference for people affected by centronuclear and myotubular myopathy in Niedernhausen near Frankfurt. (For more information about the organisations and the conference visit the ZNM and Myotubular Trust websites. You can also read about the conference in The Information Point newsletter Our World).

arlene

Arlene, one of the organisers of the conference, requested seeds to give away as a small gift at the end of the 2016 conference, saying:

The last conference day was also Mothers Day and we thought, that it would be nice to hand a small present to all the mothers and families at the conference. Sunflower seeds from The Big Sunflower Project seemed to be just the thing to share.

Toni sent me 50 packages with seeds and we wrapped them with some ribbon a piece of chocolate and the business card. It was a great success and from our conference the seeds travel to several European States, to the US and Canada.

arlene-2

My mum and I planted our seeds right after the conference and all but two seeds became wonderful flowers. We reserved this one planting pot to be our ‘sunflower pot’, adding new soil we use it every year. In fall we harvested lots of seed. There will be enough to not only replant seeds in our sunflower pot but to also plant some outside where they will be a wild life hiding place in the summer and a feeding place in the winter.

Milford Pre School Plus

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Milford Pre School Plus took part in The Big Sunflower Project in 2016. Below school teacher Sarah shares her story about taking part in The Big Sunflower Project.

I feel passionate about children being involved in gardening and learning all about growing from an early age, it’s something they are naturally interested in and so learn new skills quickly.

These skills include carefully planting one sunflower seed, watering it and potting on so we can give the roots more room. We then plant them out into our lovely allotment where they join lots of fruits, vegetables and wild flowers, all grown by our young children.

Our children love growing sunflowers, as they grow fast and the flowers are beautiful. We also enjoy picking out the seeds to feed our resident sparrows.

I was keen to support The Big Sunflower Project, as we are lucky to have supportive parents who take on experiences they can share with their children and grow them at home. I sent information with each seed in its pot to enable parents to read up on the project too and we had lots of photos of the sunflowers growing at home to share.

milford-pre-school-allotment

milford-pre-school-sunflower

Natalija

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Hello! My name is Natalija! I am from Croatia.

My son Ante is 7 and he suffers from congenital muscular dystrophy. Regarding his condition he stays at home on home health care.

In order to make a special atmosphere for him I decided to decorate terrace with plants. Plan was to create an outdoor space as relaxing ambiance. When I saw The Big Sunflower Project it was like that special moment in your life when you recognize the real thing.

I have never grown sunflowers before but suddenly I had a great wish. It didn’t look challenging. When the sunflowers bloomed it was pure magic. The whole family like it. It is an enjoyable experience and I will definitely grow it next year.

natalija

Herne Bay Infant School

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Herne Bay Infant School took part in The Big Sunflower Project in 2016. Below school teacher Lois shares her story about taking part in The Big Sunflower Project.

I first heard of the project in 2015 and really wanted to participate to raise awareness of centronuclear and myotubular myopathy.

We had a circle time with the children to celebrate that everybody is different and that’s what makes us an individual.  We then explained that some people need extra help and support from others.

We discussed things that we are grateful of such as speech and being mobile, which sometimes we take for granted. We celebrated how we are different from each other but also our similarities.

The children helped plant the seeds and we discussed what they needed in order to grow, the children loved the responsibility of watering the sunflowers and monitoring their progress by measuring and talking about the differences.

Sunflower grown at Herne Bay Infant School.