Scientific Advisers
Professor Sanjay Sisodiya MA PhD FRCP
Patron & Medical AdviserProfessor of Neurology. Clinical & Experimental Epilepsy. UCL Queen Square Institute of Neurology. Faculty of Brain Sciences
Professor Helen Cross OBE
Medical AdviserProfessor Helen Cross is The Prince of Wales’s Chair of Childhood Epilepsy and Head of the Developmental Neuroscience Programme at UCL
AHC UK Trustees
Adrian Kowal
Chair
Katherine Behl
Vice Chair & Research Liaison
Abhishek Behl
Communication & Social Media Rep
Sue Kemp
Adult AHC Liaison
Lyndsey Chand
Secretary
Jo Brown
TreasurerVoluntary Committee Members
Adrian Kowal
ChairRole/what you do on the committee: Chair
Reason for getting involved with the committee: My son was diagnosed with AHC in August 2014 and I immediately wanted to do something to help raise awareness of this little known condition.
Where you live in the UK: Hampshire
Get in touch with me on:
Katherine Behl
Vice Chair & Research LiaisonRole/what you do on the committee:
vice-chair and research liaison committee member. This involves working with the AHC researchers and AHC family community to help provide resources for families and professionals, assisting in putting across the AHC family voice in research, and making the research more accessible for families and carers to understand.
Reason for getting involved with the committee: My daughter was diagnosed at 6 months old due to the epilepsy gene panel showing an ATP1A3 mutation, although her diagnosis was suspected clinically prior to that. We were in hospital weekly prior to that due to the severity of her symptoms. It was scary as a first-time mum and not the life I had anticipated. With the diagnosis came more uncertainty, fear for the future and knowledge there was no real effective treatment. However, it also brought an extended AHC family and support network that helped me through that difficult diagnosis period and times since. I wanted to do something, and give back to the community, so got involved with AHC UK with the hope of using my skills to help bridge that gap between clinicians, researchers, families and the people that matter at the heart of this our AHC champions.
Where you live in the UK: I live in Scotland
Get in touch with me on:
Abhishek Behl
Communication & Social Media RepRole/what you do on the committee: I look after the website and social media of AHC UK.
Reason for getting involved with the committee: My involvement started just after my daughter was diagnosed with this medical condition. Children and adults living with this medical condition are all amazing. Being involved with this committee is just a little that I can give something back to them.
Where you live in the UK: I live in Scotland
Get in touch with me on:
Sue Kemp
Adult AHC LiaisonRole/what you do on the committee: Hello and I am Sue, my role at AHC UK involves connecting with Adult AHC Champions
Reason for getting involved with the committee: I have a daughter Lizzie who is 36 so have been part of the AHC rollercoaster journey for a long time. All the adults are very different from each other. I am passionate about making it easier for their futures and to have fun. Anyone is welcome to contact me – sometimes we just need a shoulder to lean on.
Where you live in the UK: I live in Kent
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Lyndsey Chand
SecretaryRole/what you do on the committee: Secretary
Reason for getting involved with the committee: I’ve joined to connect with other families in the same position, and in the hope that we can improve things for all our children.
Where you live in the UK: West Yorkshire
Get in touch with me on:
Jo Brown
TreasurerRole/what you do on the committee: Treasurer
Reason for getting involved with the committee: My Goddaughter, Anya, was diagnosed with AHC when she was about six months old. I have known Anya’s Mum, Katherine, from university and wanted to help where I could following the diagnosis. The impact of the diagnosis of an ultra-rare condition for families has a ripple effect across their lives. Being part of AHC UK has allowed me to see how families manage this and to have a greater understanding of how best to offer support.
Where you live in the UK: Scotland
Get in touch with me on:
We are open to others who would want to join our UK committee – If interested in joining do Contact us