Posted in Uncategorized on May 7, 2013 |
The second International Symposium on ATP1A3 in disease will take place in Rome, on September 23 –24, 2013.
The rich and interesting program of this Second Symposium is an evidence of the great work done by so many researchers involved in AHC, in this last year after the finding of the ATP1A3 gene, thanks also to the collaborations fostered by the first Symposium in Brussels last December.
Please visit: www.symposium-atp1a3.tk
Posted in Uncategorized on May 7, 2013 |
Connecting rare disease patients globally across 5 languages
RareConnect is an online social network for patients and families and is a safe space where individuals affected by rare diseases can connect with each other, share common experiences, and find helpful information and resources. Organised into disease specific communities, the platform involves patient associations in the governance and growth of each community. Translation of stories and forum posts is done by human translators from a distributed online network. With this unique feature, patients are engaging in conversations with others in languages they do not even speak themselves.
Posted in Uncategorized on April 9, 2013 |
Posted in Uncategorized on January 27, 2013 |
We have received a donation of £500.00 from Catsfield Amateur Dramatic Society.
A member of staff at Joanne McCarroll’s house is involved in the above dramatic society.
Our group was put forward to receive a donation from their Christmas Pantomime and we were extremely lucky to be chosen to receive their donation of £500.00
We would like to express our sincere gratitude to CADS for the first donation to AHCUK
Joanne accepting the cheque
Posted in Uncategorized on January 27, 2013 |
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.
Committee members
Membership fees
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.
Posted in Uncategorized on August 4, 2012 |
The AHC support group wil be meeting on the 27th October this year. Contact Jill for more details and to let her know you will be attending:
Jill Bailey
Tel: 01753 546268
email: jillbailey80@hotmail.co.uk
Posted in Uncategorized on August 4, 2012 |
Research teams in the United States, United Kingdom and Europe have identified a gene mutation that may account for more than 70% of cases. This was an international effort.
The full paper was published in July 2012 on the Nature Genetics website.
Identifying the gene is a fantastic first step to understanding exactly what is happening in the bodies and brains of AHC patients, and ultimately in developing treatment and even a cure.
The ahckids.org website, home of the AHC Foundation in America, predicts that specialised treatment could be available within 10-15 years.
It is important for people affected to know that work goes on into the condition here in the UK itself, blood samples were taken from some of our children and used in this research.
It is important to know that when funds are being sought for more research, for potential funders to know that work is done here, and that they can support that work in the UK.
If anyone would like to fund raise please contact Jill at jill-bailey@live.co.uk
Things are looking up!
Posted in Uncategorized on May 31, 2011 |
Hello everyone!
Our annual meeting will be held on Saturday 18th June from 10.30 onwards. The venue will be at The National Society for Epilepsy, Chesham Lane, Chalfont St. Peter, Bucks, SL9 0RJ
Exciting news! – Professor Sanjay M Sisodiya who works at the NSE and is currently conducting research into epilepsy has shown an interest in AHC. He will attend our meeting and give a talk about his research. He will show us all the equipment that they are using (3D photo imaging) etc.
He is keen to have some blood samples of children and their parents. He is also willing to have more children referred to him in his clinics. I think this is a breakthrough.
Please contact Jill if you are interested in attending. She needs to know numbers. It would be really great if as many of us as possible could make the journey to meet with Prof. Sisodiya. As usual, Jill will provide lunch and endless tea and coffee.
Contact details:
Jill Bailey
Tel: 01753 546268
email: jillbailey80@hotmail.co.uk
Posted in Uncategorized on May 30, 2011 |
July 2010
This year’s summer meeting was held on Saturday 19th June in Windsor, Berks.
Ten families attended. For three families it was their first meeting and their first experience of meeting other children and young adults with alternating hemiplegia.
As each year passes our families are getting to know each other and enjoy catching up on the previous years events.
Everyone shares their up and downs and gets tips from each other.
The new additions to our group enjoyed the day and found it very helpful. They come from far and wide.
Tom, Lene and Patrick travelled from Indonesia, Emma, Gavin and Abegail from London and Kate and Archie from Poland.
Professor Neville was unable to attend this year but Theresa Hanson from ACH Homes came along to give advise to parents about preparing for the future. Three of our girls are currently placed in ACH homes in the south-east and are enjoying independance and a full and complete life with the care and support of young and active staff.
I am going to the next Extended Network Meeting of the European Network of Expertise for Rare Paediatric Neurological Diseases (nEUroped) on 21-23 November in Brussels.
I will post an up-date after the event.
Best Wishes Jill
