When you set up a regular donation you become part of the Noonan Syndrome Associations long term aims. To enable the charity to support its members, increase awareness of the syndrome and fund vital research.
To date our modest charity has celebrated many proud achievements on a very limited budget with voluntary hours, with the exception of one part time employee. The UK charity currently has 500 families in its membership but with 1:2000 individuals being diagnosed with the syndrome; we need to reach out to support many more.
The annual Families for Families event has become larger and more successful each year for the past 10 years. We provide a free day conference for families, attended by the top medical professionals with a specialist interest in the syndrome. Whilst adults can learn about the up-to-the-minute- research, treatment recommendations and receive advise on any problem they are experiencing, we keep the children and young people busy with a variety of indoor and outdoor activities, where they have the opportunity to learn new skills, conquer fears and have plenty of fun!
Activities include kayaking, sailing, canoeing, climbing, zip wire and abseiling. In addition to the day events we heavily subsidise overnight accommodation, and the feedback we have received from families is always overwhelmingly positive. We recognise the support required for siblings, parents, and any individual with the syndrome. These events help us to reach out to everyone.
One member even told us the event was “life changing” for her. So, this event has a very positive impact on organisation members and remains an important priority. Research is another key element of the charity and we must ensure that there are significant funds available to continue to invest in vital projects.
We are reaching a wider audience through our social media and online presence, we have a regular blog feature, and provide news updates as often as we can. We are associated with other genetic organisations throughout the world, and through these connections we can share and disseminate relevant and important information.
An ongoing challenge for the charity board is ensuring that the charity funds are not all absorbed in the very significant costs in organising and running the families weekend. Our charity is free to members, and this is important to our organisation values, but to continue with all our work we depend on the public for regular funds. The charity has a regular-giving scheme, where any amount by regular monthly donation can really help the charity to keep going. £10 a month is 1 coffee a week, £30 a month is one take away. Can you please support us?