Meet Our Team

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.

Vice Chair

Julie Pender is a dedicated advocate for rare diseases and a passionate campaigner for families affected by Syngap1. After her own family’s journey with the condition, she founded a UK charity to drive awareness, accelerate research, and build support networks for those living with this ultra‑rare genetic disorder. Her work has helped bring greater visibility to a community often overlooked, and she continues to collaborate with clinicians, researchers, and global patient groups to push for better understanding, earlier diagnosis, and meaningful progress.

Alongside her advocacy, Julie has built a 24‑year career leading some of the world’s most recognisable beverage brands. She is currently Marketing Manager, Chivas & Ballantine’s Core for Pernod Ricard Global Travel Retail, contributing strategic insight and cultural relevance to one of the industry’s most dynamic global channels. Her previous roles include senior marketing positions across Pernod Ricard, Lion Craft Beer, Edrington‑Beam Suntory, Berkmann Wine Cellars, and William Grant & Sons.

Julie blends her professional expertise with her commitment to rare disease advocacy, bringing empathy, creativity, and a purpose‑driven outlook to every project she leads.

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.

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!

 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.