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Turning the tide for rare disease

The Big Sunflower Project

In 2011 Toni Abram established The Big Sunflower Project to raise awareness of the rare neuromuscular conditions known as centronuclear and myotubular myopathy. The project encourages people to grow sunflowers and share their photos on social media to raise awareness of the conditions

The Big Sunflower Project was established following my dad and me being diagnosed with centronuclear myopathy. Neither of us had heard of the condition or had any idea what a myopathy was prior to our diagnosis. It was 1999; Dad was 55 and I was 28.

Toni and her dad, Mike

About centronuclear and myotubular myopathy

Centronuclear and myotubular myopathy (CNM and MTM) are rare inherited neuromuscular diseases, of which there are three forms of inheritance: x-linked, autosomal recessive and autosomal dominant.

The term myotubular myopathy is currently used to describe the x-linked form of the condition, while centronuclear myopathy is used to refer to the autosomal forms. Collectively, the three forms are known by the umbrella term of ‘centronuclear myopathies’ as illustrated below.

In turn the centronuclear myopathies belong to a group of conditions known as congenital myopathies, which are inherited muscle disorders from birth. The characteristic feature of the centronuclear myopathies, is the presence of the nucleus in the centre of the muscle fibre instead of the usual position at the edge, manifesting as defects in the cell structure of voluntary muscles, causing low muscle tone and affecting children and adults at various stages of life.

The word “myopathy” is derived from the Greek language where “mys” means both “mouse” and “muscle”, and its combining form gives the medical prefix “myo”, with the word “myo” meaning “muscle” and the word “pathy” meaning “disease”. Interestingly, the word “muscle” comes from the Latin word “musculus”, which literally means “a little mouse”, and is so called because the shape and movement of some muscles (notably biceps) were thought to resemble mice.

The centronuclear myopathies are so rare, there are no good estimates of their incidence, a guesstimate would be somewhere between 1:50,000 and 1:100,000 for each form and perhaps slightly greater when the forms are combined. Dad and I are diagnosed with the autosomal dominant form of centronuclear myopathy, which is generally not as severe as the other forms of the condition and follows a mild course. Many with this form of the condition are often able to walk well into adulthood but may find themselves in a wheelchair in later life. Those with the condition often report a deterioration in their ability to carry out everyday tasks, such as walking upstairs, rising from a sitting position unaided, opening bottles, lifting and carrying, and a weakening of their voice.

The most commonly known form of the condition is x-linked myotubular myopathy. There are also incidences of female x-linked manifesting carriers. Those affected by x-linked myotubular myopathy often have diminished respiratory capacity and are often partially or totally ventilator dependent. Many with this form of the condition are “trached”, meaning that a tube is inserted into the individual’s neck to help them breathe, and this may result in them being behind with their language skills, but a speaking valve can help with this.

The autosomal recessive form of centronuclear myopathy usually occurs in infancy or early childhood. Weakness of the muscles in the face may occur, as may droopiness of the eyelids. Some people may have problems with feeding, and there is usually weakness of the muscles closest to the trunk of the body, known as the proximal muscles.

The Big Sunflower Project

Who doesn’t love sunflowers, with their cheery demeanour oozing positivity, even on the darkest days, standing tall and finding the sunlight? I love sunflowers and the way they grow to such dizzy heights, as if they are on a mission to touch the sky and nothing can hold them back.

When I began The Big Sunflower Project it occurred to me that many charity fundraising or awareness raising projects involved people doing something physical—being sponsored to run, swim, climb or bicycle, something that even I, although ambulatory, would not be keen to do. However, popping a seed in a pot and nurturing it for a few weeks was something most people could do, whatever their physical ability and that was very appealing to me, because it meant that those diagnosed with centronuclear and myotubular myopathy could take part too.

In 2011 I had never grown a sunflower and have had all sorts of adventures with them, from hungry slugs and snails, to the unpredictable British weather, to sunflowers that didn’t flower until November. However, through good years and bad, I have enjoyed every one of my years growing sunflowers, and despite the challenges, it is hugely satisfying to be rewarded with big smiley sunflower faces at the end of it all. Each year I have watched in awe as my sunflowers have grown from tiny seeds to giants that tower over me, and each year, as my sunflowers have grown and the project has grown, knowledge about centronuclear and myotubular myopathy has grown too. Twenty years on from Dad and me receiving our diagnosis, clinical trials are now underway, something we would never have believed possible back then.

2022 is the twelfth year of The Big Sunflower Project and it has been a joy to watch not only my own sunflowers grow but the sunflowers of project participants too, with people joining in from across the UK, Ireland, the Isle of Man, the USA, Costa Rica, Argentina, the Philippines, the Middle East, Australia, New Zealand, Germany, the Netherlands, France, Croatia, Hungary, Sweden, Austria, Lithuania, Greece and Poland. Sunflowers have been grown in gardens, on allotments, by schools, hospitals, community groups and even in a vineyard. It is the best feeling when the project reaches people who have never heard of centronuclear myopathy and they write to tell me so.

The project has a lovely community feel, even though participants are located far and wide. A global community of sunflower growers. It is a particular delight when photos arrive over the UK winter from parts of the world enjoying their summer, and when summer reaches the UK, I have the pleasure of welcoming back those who have grown sunflowers with the project in the past and welcoming new growers too.

Each year the photos received are posted online which raises awareness of centronuclear and myotubular myopathy, and I hope the photos spread seeds of happiness wherever they are seen too. This year, it feels as if growing sunflowers has an added importance also, as sunflowers are the national flower of Ukraine and if happiness is needed anywhere right now, it is there. So this year, my sunflowers will be grown for the people of Ukraine as well as to raise awareness of centronuclear and myotubular myopathy.

Take part

Could you grow a sunflower to raise awareness of centronuclear and myotubular myopathy this summer? Taking part is easy:

1. Buy a packet of sunflower seeds

2. Plant a seed in a sunny spot, water regularly and watch it grow

3. Take a photo of your sunflower and share on your favourite social media platform using #TheBigSunflowerProject

Further information

The Big Sunflower Project: thebigsunflowerproject.com

Facebook: facebook.com/groups/406061643077357

Twitter: twitter.com/BigSunProject

Instagram: twitter.com/BigSunProject

LinkedIn: linkedin.com/company/75028574

Toni and Mike’s story: a-little-bit-of-this.co.uk/me-and-my-dad


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