The story of Toni
My name is Toni and I am the founder of The Big Sunflower Project which raises awareness of the rare neuromuscular conditions called centronuclear and myotubular myopathy.
Me and my dad were diagnosed with autosomal dominant centronuclear myopathy (CNM) in 1998. The condition we were told was rare and we were unlikely to find anyone else in the world with the same diagnosis. Both diagnosed as adults, we had a mild form of the condition. However the illness was likely to progress and it was likely we would end up in a wheelchair but no one could say how far away that day might be.
In 2011 I established The Big Sunflower Project. Sunflowers were chosen because of the positive outlook I think they convey – I love 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. It occurred to me that many charity fundraising/awareness raising type 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.
This year is the twelfth year of the project. During this time participants have joined in from across the UK, Ireland, the Isle of Man, the USA, Costa Rica, Argentina, the Philippines, Australia, New Zealand, Germany, The Netherlands, France, Croatia, Hungary, Sweden, Austria, Lithuania, Greece and Poland, in gardens, on allotments, by schools, hospitals, community groups and even in a vineyard
If you would like to join me in growing sunflowers this year, 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 social media using #TheBigSunflowerProject.
Every photo received helps the project raise awareness of centronuclear and myotubular myopathy.
Learn more and join in below.
* Website: https://thebigsunflowerproject.com/
* Facebook: https://www.facebook.com/groups/406061643077357
* Twitter: https://twitter.com/BigSunProject
* Instagram: https://www.instagram.com/thebigsunflowerproject/
* LinkedIn: https://www.linkedin.com/company/75028574