AHC UK

Scientific Advisers

Professor Sanjay Sisodiya MA PhD FRCP

Professor Sanjay Sisodiya MA PhD FRCP

Patron & Medical Adviser

Professor of Neurology. Clinical & Experimental Epilepsy. UCL Queen Square Institute of Neurology. Faculty of Brain Sciences

Professor Helen Cross OBE

Professor Helen Cross OBE

Medical Adviser

Professor Helen Cross is The Prince of Wales’s Chair of Childhood Epilepsy and Head of the Developmental Neuroscience Programme at UCL

Committee Members

Adrian Kowal

Adrian Kowal

Chair

Role/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

Katherine Behl

Vice Chair & Research Liaison

Role/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:

Jo Brown

Jo Brown

Treasurer

Role/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:

Lyndsey Chand

Lyndsey Chand

Secretary

Role/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:

Vickey Lewis Kowal

Vickey Lewis Kowal

Family Liaison & Support

Role/what you do on the committee: Hi I’m Vickey, I am the family liaison for AHC, I am often the first person people make contact with either via messenger, email or phone. I’m more than happy to chat with families (new and not so new) about diagnosis, our experiences with our son, ideas and generally to be a sounding board. If I know of families with similar issues I make contact to try to get families in touch with each other. I also help with managing both the open and closed pages on Facebook. 

Reason for getting involved with the committee: I’m keen to help others especially when they first receive a diagnosis. I remember just how daunting it was and how lonely we were I truly want to make that road a little less scary. I know how vital it is to speak to other parents “who get it” and whilst I knew other special needs parents none of them could understand the idiosyncrasies of AHC. It’s not something you can understand unless you’ve lived it. 

Where you live in the UK: We are based in Hampshire but since there are so few people with AHC we try to keep in contact with families virtually. 

Get in touch with me on:

Jade Cook

Jade Cook

Fundraising Liaison

Reason for joining committee: My daughter Annya was diagnosed with AHC in 2014 and AHCUK was a great support network for me during that time and beyond. I hope to be able to help support new families to the group and help with fundraising ideas, so we fund as much research as we can regarding this rare disease.

Where I live in UK: Dumfries & Galloway, Scotland

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Sue Kemp

Sue Kemp

Adult AHC Liaison

Role/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

 Get in touch with me on:

Abhishek Behl

Abhishek Behl

Communication & Social Media Rep

Role/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:

We are open to others who would want to join our UK committee – If interested in joining do Contact us