Chester woman Toni Abram is commemorating the 10th anniversary of the Information Point for Centronuclear and Myotubular Myopathy by giving away free sunflower seeds

Mar 24 2011 by David Holmes, Chester Chronicle

A WOMAN with a rare neuromuscular condition wants people to grow sunflowers to celebrate the 10th anniversary of the website she set up to support sufferers.

The site – www.centronuclear.org.uk – is run by Toni Abram from Huntington who, together with her father Mike, was diagnosed with a form of centronuclear myopathy in 1998.

Now Toni is commemorating the 10th anniversary of the Information Point for Centronuclear and Myotubular Myopathy by giving away sunflower seeds to spread awareness.

Toni said: “Sunflowers are prominent in the design of the website. They were chosen for the positive outlook which 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 and as such I thought it would be a lovely idea, as a way of marking 10 years, to ask people to grow sunflowers in 2011 to raise awareness of centronuclear and myotubular myopathy.”

Toni will give away seeds, donated to her, to individuals, organisations or schools.

“All I am asking is that people send a photo of themselves with their sunflower, so it can be included in an online photo gallery later in the year,” she added.

Symptoms range from mobility issues with some having to use a wheelchair, respiratory problems, leading those affected to be dependant on a ventilator, while others may have to use a feeding tube.

Toni explained that she and her father have the minor form of the condition meaning they have trouble walking long distances and climbing stairs.

Anyone wanting to get involved should email centronuclear.org@btinternet.com with the subject line ‘Free seeds please’.