Meet Our Team

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Chairman

I work full time and run a charity friends play for disabled children. I am patient ambassador for illumina & Eurordis – representing the voice of rare disease patients in Europe. I am Mum to Saskia Antonia Battye who has a diagnosis of Syngap1. 

I want to help make a difference to those families living with a diagnosis of Syngap1 and understand first-hand the challenges placed on family life. 

I am looking forward to building a support network & sharing information to increase our strength & knowledge by raising the profile of Syngap1 within the UK.

 Treasurer

I work part time for a bank, and run a charity friends play for disabled children. I have two children Lauren and Ewan, Lauren has PDA/ASD/MLD.

I wanted to offer my help and support those families living with Syngap1 so that they have somewhere to turn for support.

As treasure for a charity I understand the expectations and I will be responsible for the financial side of the trust, monitoring spend, preparing profit & loss accounts, balance sheets and year end returns for auditing purposes.

Secretary & UK Family liaison

I work as a Finance Manager for a large GP Partnership. I am also currently studying part-time to become a speech and language therapist. 

I have two children Tobi & Oli. Oli has a diagnosis of Syngap1, I would like to support other families whose life got changed due to their child’s condition.

I would like to keep raising the profile of Syngap1 by building a stronger family network so that our children get the best support to achieve their potential.

 Fundraiser

I am currently a stay at home Wife/Mum which has been a privilege. Prior to this I worked for the NHS.

Looking to the future I want to work with SEN children and their families. 

I am passionate about raising awareness and fundraising for Syngap1 in the hope it will benefit families and raise awareness in the community and support further research. 

It is lovely to be part of an amazing group of people.

 Fundraiser

I am a full time Mum to three children. Lauren, Bethany who has Syngap1, and Ethan and we live in Northern Ireland.

I enjoy researching Syngap1 and affiliated medical contentions so I can aid my daughter. I have just complete a diploma in Applied Behaviour Analysis. 

I like to share my experiences with out families whilst at the same time learning from others.  

In my spare time I love to keep fit. I try to include Bethany where possible whether it be swimming in the sea, cycling or running. 

I like to raise funds for charity competing in triathlons, marathons & even ironman. 

I love to meet up with other Syngap1 families and want to raise more awareness of Syngap1.

IT & Fundraiser

Proud Dad to Luna who was diagnosed with Syngap1 on the 22nd July 2024 at the age of 2. My background is within IT, and I want to contribute towards the community by providing IT support and website updates. 

I want to build and develop a wealth of resources for families to use in their efforts to understand their diagnosis, provide support packs and strengthen the community.

I am also fundraising by doing various challenges with a slight difference to raise awareness for hidden disabilities!