Health, disability & well-being

Funding level: Up to £1,000

Description

The Maffucci & Ollier’s Association is a non-profit making organisation, established in 2013 for the rare diseases, Maffucci Syndrome and Ollier’s Disease. Founder, Charlotte Anwyll launched the Association after her sons diagnosis in 2012. With little information and support available to their family, she never wanted another individual to feel how they did, alone.

Since diagnosis, Charlotte has founded and managed voluntarily the Maffucci and Ollier's Association. This includes producing and maintaining a website, organised conferences, making day to day contact/response, developed partnerships, promoted the association and recruited a medical advisory board and a committee of volunteers and researching and initiating projects.

Ollier’s Disease and Maffucci Syndrome are extremely rare, Ollier’s occurs in 1:100,000 people and Maffucci Syndrome even rarer. Once diagnosed individual’s treatment can vary across the world; with no cures, limited funding for research, little support available and no medical protocol in place the conditions can feel like there are no answers to many questions.

The Association are applying for a grant to fund the work of ‘The Maffucci and Ollier’s Association’ which has developed and grown within a short time with limited funding. After successfully receiving an Aviva Community Funding Grant in 2015, we would like to once again use this funding to continue in developing our work and supporting individuals, families and professionals.

The funding will enable us to; manage the day to day management of the organisation, produce literature and resources to promote and raise awareness, to allow the Association to meet professionals and other organisations and share good practice, to provide support and bring together individuals and families of all ages and organise events such as an annual conference. Through experience, research and feedback received, we can prove a conference is a much needed resource for our community. It is the only event that is held in the UK for the conditions, at our first conference in 2013 we had 8 attendees, this has grown each year and in 2016 this reached nearly 50 with attendees. Over the years we have had people from all over the world - England, Scotland, Ireland, France, Belgium, Australia and America.
We found the UK has a strong record of supporting those with a rare disease, with funding we hope to strengthen this to bring our community together to reduce the feeling of isolation. The Association has proven a need through our outcomes, a growth in attendees to our conference and has empowered individuals to support further (fundraising, volunteering, share medical information), we now have a medical advisory board with skills and knowledge to support our work as with no medical protocol individuals need to be well informed.
The conference reduces the feeling of isolation, through evaluation forms the feeling by many can be summed up by a 2014 attendee “Today was just so lovely for me and I'm sure others too, to finally meet people who can relate to you and who understand how you feel, because however supportive people around you are, they don't understand how alone you feel.”

The grant is not a short term fix, we have proven that our work is a need for the community. A grant will develop our work, allow us to work to a professional standard, with professional resources, in turn to enable us opportunities to organise future projects, develop partnerships with other organisations all of which will benefit the Maffucci and Ollier’s Community for the future.

The Maffucci and Ollier's Association

Location: United Kingdom

The rate of growth is a testament to the dedicated group of individuals that support the Association,but it is also a stark reminder that those living with these conditions need a voice.Our fantastic support shows we are a much needed resource,that leaves us all with a desire to keep moving forward.
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