Max Appeal aims to improve the quality of life of children, young people and adults with 22q11.2 deletion by raising awareness of this chromosome defect that affects as many as 1 in 1,800 of the population and to bring about permanenet improvements in the social and medical care of people with 22q11.2 deletion.
Max Appeal, whilst being a very small charity, is one of the largest in the world and helps hundreds of families every year.
How your fundraising can make a differenceMax Appeal is establishing a national protocol for the care of people with 22q11.2 deletion syndromes called the "Consensus Document". This will amterially improve the quality of life for all those with the conditions and their families.
We hold conferences/open days for members to meet with medical professionals to share research and information. Past venues include Centre for Life in Newcastle upon Tyne, National Space Centre in Leicester, Bristol Zoo Pavillion and Imperial College, London.
Our newsletters keep members and professionals up to date with information and has family stories for people to share.
Events and weekend breaks provide exciting challenges and a unique opportunity for children and teenagers to meet others with 22q deletion.
Our national freephone helpline: 0800 389 1049, is manned by trained volunteers.
A comprehensive information pack and handbook for a newly diagnosed person and their family.
A grant towards travel costs to parents who may live many hours from the hospital where their child is being treated.
Supply of specialist equipment such as INR machines for children on warfarin, to monitor thier blood clotting rates without having to travel to hospital, and training for them or their parent/carer to use the machine.
There are loads of ways you can help and support us, but raising much needed funds is key to our success.
A few fundraising ideas are included on our website and we have lots of examples of past events which our members have organised or participated in to help boost the pot of money we have to deliver services and the aims of Max Appeal.
As our charity grows bigger and we support more families we need to increase our income to even to do the same things!
If you have an idea or you would like some help to get started please contact us, as we are here to help.
You can email; firstname.lastname@example.org
or email@example.com or telephone us on; 01761 462578 or 01384 821227.