01633 211514

ahcuk@outlook.com

AHC UK Committee




AHC UK Committee

Name: Jill Bailey
Position on Committee: Chairperson / Founder
Personal link with AHC: my daughter Lucie has AHC
Reason for getting involved with committee:  I started the group 25 years ago with the help of Lucie’s Neurologist at GOS, Dr. John Wilson. We had a page in the Contact a Family Directory which went out to Health Professionals. The idea was to bring families together and offer support and hold a family meeting annually. 
Where you live in the UK: South Wales

How to contact you: email: Jill-bailey (@) live.co.uk / ahcuk (@) outlook.com. Tel: 07715552953. Home: 01633 211514. 


Name: Vickey Lewis-Kowal
Position on Committee: Family Liaison
Role/what you do in the committee: I’m here for families to contact when they are going through a tough time or they are new to the diagnosis.
Personal link with AHC: My son Ollie has AHC
Reason for getting involved with committee: To support others through this rollercoaster ride that is AHC
Where you live in the UK: Southampton
One interesting/fun fact about you: I love to travel and have walked on the Great Wall of China.

How to contact you: vickey (at) ahcuk.co.uk 


Name: Kate Alves-Areias
Position on Committee: Fundraising Contact 
Role/what you do in the committee: Jade and I are here to help people with fundraising ideas and to be the first point of contact for anyone who has an interest in helping us to raise funds.
Personal link with AHC: Our daughter, Naomi (aged 7) was diagnosed with AHC at 8 months of age.
Reason for getting involved with committee:  I really wanted to give something back and to help other families who are dealing with this horrendous diagnosis. By actively fundraising, I feel like I am doing everything within my power to find a cure for Naomi and all the other children and adults who suffer from AHC. I love organising things, so being involved with fundraising seemed like a natural avenue to go down.
Where you live in the UK: Northern Ireland
One interesting/fun fact about you: I’ve broken 13 bones in my body. 
Anything else you would like to share: I’d love to see as many people as possible getting involved with fundraising – it’s a great way to spread awareness about the condition and have fun with friends & family. Every penny brings us one step closer to finding the cure for this debilitating condition. 

How to contact you: kate (at) ahcuk.co.uk


Name: Jade Cook
Position on Committee: Fundraising Liaison
Role/what you do in the committee: Kate & I are here to assist anyone who wishes to help with fundraising ideas.
Personal link with AHC: My daughter Annya has AHC and although her symptoms started soon after she was born, she wasn’t diagnosed until she was almost 3 years old.
Reason for getting involved with committee: I felt it was important to carry on the work that Jill started over 25 years ago and with modern technology we can reach out to others who have a link to AHC. I would like to help raise as much money as possible which will assist in research into AHC & hopefully find a cure to help the individuals suffering from this awful disease.
Where you live in the UK: Dumfries, Scotland.

How to contact you: jade (at) ahcuk.co.uk 


Name: Abhishek Behl
Position on Committee: Social Media & Communications
Role/what you do in the committee:I look after AHC UK Social Media & Communication Channels.
Personal link with AHC: My daughter Anya has AHC
Reason for getting involved with committee: Wanted to give something back via social media & communications to our kids that go through so much with this medical condition.
Where you live in the UK: Edinburgh
One interesting/fun fact about you: Before I started looking after my baby daughter, I used to head a Tiger Conservation charity for 7 years. 
Anything else you would like to share: I also have been living with Multiple Sclerosis (Relapse-Remitting form) for 17 years.

How to contact you: abehl.k (at) gmail.com & my twitter handle @ABehl_


Name: Katherine (Walesby) Behl
Position on Committee: Research Liaison
Role/what you do in the committee: I liaise with the AHC researchers and will review grant proposals for funding from AHC UK for AHC research.  I also plan to update the website with AHC research links and information for parents. I hope to be a point of contact between the parents and researchers.
Personal link with AHC: My daughter Anya was diagnosed with AHC at 6 months old in February 2018 after having her first episode at 10 weeks old. 
Reason for getting involved with committee: I am a doctor physician (General Internal Medicine and Geriatric Medicine) and medical researcher (currently undertaking a PhD).  I struggled when my daughter was diagnosed and found being a doctor mummy difficult when coping with an extremely rare condition.  After a while, I realised I wanted to do something positive and hopefully be of use to the AHC community with my background.  I have no clinical professional expertise of AHC but by being involved with the committee, liaising with researchers and using my medical research background to review grant proposals I hope to be a helpful bridge between parent and the medical AHC research world to further our understanding of AHC.  
Where you live in the UK: Edinburgh
One interesting/fun fact about you: I have abseiled off the Tyne Bridge and Forth Rail Bridge for charities….and would now like to do a few more for fundraising for AHC!

How to contact you: katherine (at) ahcuk.co.uk


Name: Adrian Kowal
Position on Committee: Vice Chair
Where you live in the UK: Southampton

How to contact you: adrian (at) ahcuk.co.uk


Name: Heather Barritt
Position on Committee: Secretary

How to contact you:  heather (at) ahcuk.co.uk


Name: Andrea Jones


Name: Sue Kemp 

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