The AHCUK would like to invite you to the next family meeting in the UK
It will be held on the 9th of May 2015 at The National Centre for Epilepsy in Buckinghamshire.
Everyone that is interested is invited to join the meeting where Professor Neville, Professor Sisodiya and Professor Helen Cross will give presentations.
AHCF Family meeting in Minneapolis, Minnesoda
It is with great excitement that we announce the AHCF Family meeting for 2014!! We will be travelling to Minneapolis Minnesota and hosting the meeting at the Hilton, Minneapolis/St Paul Airport, Mall of America www.mspairport.hilton.com The meeting will take place June 26 – 28 with clinical appointments by Dr Swoboda’s team from the University of Utah taking place before the meeting June 24 – 26.
Thank you to Mary Kay Riley for finding this venue which will be perfect for our meeting!
As she has done before each Family Meeting, Dr Swoboda and the Pediatric Motor Disorders Research Clinic team will be conducting AHC clinical appointments. Accompanied by her expert medical team this includes DNA collection and inclusion in the AHCF Clinical Registry, Genetics Counseling, History and Physical or update of previous H & P, Physical Therapy Assessment and a Private Session devoted to a patient question and answer period with one of the AHC experts on the team. There is no cost to the families for this.
There may be a nominal cost to schedule time with a behaviorist and other specialists as we further plan the agenda.
You will also get to meet and ask questions of our Medical Advisory Board which includes some of the premier experts in AHC, Dystonia, Behavior and Epilepsy.
We are devoting 3 days to meet, discuss, learn and exchange ideas. There will be no sessions scheduled for Sunday which allows for easy departure but we may have an informal gathering as a last good bye. We will be working on the agenda and investigating possible activities and hope to have the meeting entirely planned by July 1st this year. We certainly would like your input and suggestions! Please email Lynnlynn@ahckids.org or Sharon firstname.lastname@example.org with your ideas.
Registrations for the Family Meeting Conference and Hotel will be posted as soon as they are available. Clinical Appointments will be filled on a first come first served basis. Details to follow.
For more information go to AHCF
3rd Symposium on ATP1A3
Lunteren, The Nederlands 29th-31st August 2014
Family Meeting in the UK May 10th 2014
The second international AHC day 18th January 2014
On January 18, 2012 scientists discovered that there was a mutation in the gene ATP1A3 that causes Alternating Hemiplegia of Childhood.
To honor this day, the international AHC community has decided to name January 18th the International AHC day.
AHC Day is a time to celebrate this first goal and to continue the work towards cure for AHC. ALso this day we promote awareness in order to diagnose possible AHC patients that are misdiagnosed today.
AFHA Family meeting in Paris, 19th October 2013
20 French families have registered for the meeting.
Talks and sessions will be in French language only .
We will welcome 5 scientists (2 geneticist and 3 neurologists) involved in various projects on AHC in France
and 2 new families who joined AFHA last month.