ASSERT was the first charity that I contacted after Leia was diagnosed. It is run purely by volunteers who are mainly parents of a child with Angelman Syndrome. They all have busy lives yet give up their time to run a 24hr phone line, organise meetings and conferences, run a shop of Angelman merchandise, decide on the best research to support, produce a newsletter, run websites and facebook pages and organise fundraising! It has a very professional feel to it but it is just 10 trustees who manage it very well. It is just as well most of them have roughly 20 hours a day in which they are awake.

The conferences have help us beyond measure as they manage to persuade all the top professionals to come together to give advice. We met Gina Davies and Chris Oliver at the first conference, they opened my eyes to a new level of understanding. (ASSERT supports Chris and his team at Birmingham University to carry out research into ways to manage behaviour, sleep and communication in a very helpful manner).

The second conference we attended we met Erin Sheldon and Mary Louise Bertram, the information they gave us opened our eyes to a whole new world for Leia, one with a very bright and fulfilled future. I cannot thank them or ASSERT enough. All this while Leia gets to go on rollercoasters for two days, it's a win-win situation.

Conferences cost thousands of pounds, as does research, meetings, newsletters, phonelines. It is all vital and they receive no government funding. This is why ASSERT have the biggest percentage of our fundraising target.

News just in the money raised by this site is going directly to help families communicate by bringing world expert Mary-Louise Bertram to the UK. Now that has to be worth a pound or two!

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.