UK ALTERNATING HEMIPLEGIA FAMILY MEETING
27TH OCTOBER, 2012
In October, 2012 The Alternating Hemiplegia UK Group hosted their annual family meeting at
The National Centre for Epilepsy in Chalfont St. Peter, Buckinghamshire.
It was attended by 14 families who travelled far and wide to attend.
We were very lucky to have two speakers on the day, Professor Brian Neville and Professor Sanjay Sisodiya.
The main topic of conversation was the recent discovery of the mutant gene that causes AHC.
On January, 2012 scientists discovered that there was a mutation in the gene ATP1A3.
On the 29th July, 2012 an article was published in Nature Genetics about the discovery by Duke University on the mutated gene.
A couple of our young adults took part in research being conducted, which involved them having blood taken and 3D photo imaging.
Also we had a team of research scientists from UCL, London arrive to run tests on a couple of our young adults. They brought with them equipment to carry out Transcranial Magnetic Screening.
One of our young adults took part in this screening at their head quarters in London during the summer. On two occasions she travelled to London and sat for many hours while these tests were carried out. The results of the first set of tests were so unusual that they asked her to return.
The results of the TMS taken on the day of our meeting are not yet known.
Discussions on the day:-
Progression of our group to a non-profit organisation.
Fundraising – any money raised in the coming year will be used for our annual family meetings, attending symposiums and raising awareness of AHC.
We hope to be able to contribute to research in the coming years if we can raise enough money.
The day was very successful with everyone enjoying lunch and catching up on events from the last meeting held in June 2011.
Everyone had time after the speeches to have individual time with both Professors and with each other.
The children enjoyed colouring, face painting and general activities in a separate room with other volunteers to watch over them while the parents were able to concentrate on the speeches.
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