The Information Point and The Big Sunflower Project
Aiming to reach families affected by the rare neuromuscular conditions known as centronuclear and myotubular myopathy, in order to provide support and give them information about managing the condition. Also to raise awareness of the conditions outside of the CNM/MTM community.
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 have a multitude of similarities and a multitude of differences, are rare, complex to understand, unpredictable 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 and bring 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.
Today the website provides a pool of information to help people, who would otherwise be very isolated and alone, learn about the condition. This helps individuals to become expert patients by networking with others who have the same conditions and encourages individuals to self-manage their condition from a health perspective. It has two distinct elements – the provision of information and the sharing of experiences. It provides a link between family, clinicians, researchers and other medical professionals and so enables them to network their collective expertise. Newsletters are published via the website twice a year and the community is kept up to date with developments as they happen via social media.
The Big Sunflower Project began in 2011 and 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. The project was only intended to last one year, to mark the tenth anniversary of The Information Point but 2016 is the sixth 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?
I have run The Information Point from my home in my spare time since 2001. The Information Point is not an income making organisation, rather the aims are to provide information and support to those diagnosed with centronuclear and myotubular myopathy and to raise awareness.
A Grassroots grant would enable me to continue the work that I have now been doing for the 15 years and to continue running The Big Sunflower Project for many years to come. It would 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, paper, printer cartridges and envelopes.
"Delighted to have the opportunity to take part in Grassroots Giving. Funding such as this is crucial to the work of The Information Point and The Big Sunflower Project and it would not be possible to continue without it. The initiative is also a fabulous platform for raising awareness of centronuclear and myotubular myopathy.