The Information Point and The Big Sunflower Project

Chester

Your story

The Information Point and The Big Sunflower Project aims to reach out to families affected by the rare neuromuscular conditions known as centronuclear and myotubular myopathy. The projects hopes to provide support and give them information about managing the condition. Also raising awareness of the conditions outside of the CNM/MTM community.

Group introduction

The Information Point was created in 2001 with the aim of helping people diagnosed with the rare neuromuscular conditions known as centronuclear and myotubular myopathy. The centronuclear myopathies, which include myotubular myopathy, are a family of conditions on a scale from mild to very severe, that affect both children and adults. The conditions are rare, complex to understand and there is no cure. The hope for the website was that it would raise awareness of the conditions and provide information and support to those affected, bringing those with the condition together, whatever their age, whatever form of the condition they have and wherever they may be in the world, with the hope of creating a one stop shop where people can visit to find all the information they will need at their fingertips and also to provide help to those whose work may bring them into contact with affected individuals.

The Big Sunflower Project began in 2011 and is an initiative of The Information Point – it aims to raise awareness of centronuclear and myotubular myopathy by asking people to grow a sunflower, giving away sunflower seeds in return for photos of the sunflowers, which are displayed on The Information Point website, in newsletters and on social media. 2018 is the eighth year of the project and seeds are now sent to schools and nurseries, community groups, groups who work with disadvantaged people, hospices and youth groups to name a few, so as well as raising awareness of centronuclear and myotubular myopathy, the project supports the activities of these groups too.

The Information Point and The Big Sunflower Project are both run by Toni Abram – Toni and her father Mike were diagnosed with autosomal dominant centronuclear myopathy in 1999 and the website is run by Toni from her home, in her spare time.

How would this funding have an impact on your community?

Funding is crucial to both the work of The Information Point and The Big Sunflower Project. A Grassroots Giving grant would enable the work of the website, that has now been ongoing for over 15 years to continue. It would also help with the costs of The Big Sunflower Project which would include the purchase of seeds (if it were not possible to get these donated), stamps and envelopes.

"Over the moon to have the opportunity to take part in Grassroots Giving. Funding such as that provided by the Grassroots Giving initiative is crucial in allowing the work of The Information Point and The Big Sunflower Project to continue and a fabulous way to raise awareness of centronuclear and myotubular myopathy too."

For more information visit:

http://centronuclear.org.uk/

https://www.facebook.com/CentronuclearAndMyotubularMyopathyInformationPoint

https://twitter.com/The_Info_Point