Focussed on creating a better
today and a brighter tomorrow for
those affected by Glut1 Deficiency.
today and a brighter tomorrow for
those affected by Glut1 Deficiency.
Meet the Team
As the Glut1 Deficiency community within the UK and Ireland grows it has become clear a dedicated charity is needed to support parents and carers of Glut1 Deficiency children and adults.
We are a small but dedicated team of parents from across the UK and Ireland who have come together to provide compassion, support and education in raising awareness of this rare condition.
For many years we have relied on support from the Glut1 Deficiency Foundation in the US and also much needed support from Matthews Friends Ketogenic Therapies Charity based here in the UK. Both charities have enabled us to bring our families together to share experiences and meet with Glut1Deficiency experts from around the world. With more families being diagnosed we recognised an increasing need for support within the UK and Ireland. This is why Glut1 Deficiency UK was created. We will continue to work closely with the Glut1 Deficiency Foundation in the US, the European Glut1 Deficiency Organisation and Matthews Friends.
Together our aim is to support families, educate and raise funds for Glut1 Deficiency research.
Chair
Trudy is based in Wales and is Mum to Daniel and Cleo. Cleo was born in 1995 diagnosed with Glut1 Deficiency Syndrome in 2002. Cleo began the Ketogenic Diet in 2002 and opted to be fitted with a feeding tube in 2018. Trudy is the current volunteer Glut1 Deficiency Foundation, European Outreach Director.
Treasurer
Sheena is based in Scotland and mum to twins Maisie and Ruby. Ruby was diagnosed in 2011 with Glut1 at age 2.5 years. Ruby is on the ketogenic diet and was fitted with a feeding tube in 2019. Ruby is determined and has an infectious smile!
Secretary
Stefanie is based in Scotland and is mum to Adam and Evan. Adam was diagnosed in 2010 and has been on the classical version of the Ketogenic Diet since that time. “Glut1 life and the ketogenic diet have presented many challenges but also opened wonderful opportunities and experiences, meeting our extended Glut1 families, and participating in the Special Olympics winning medals in cycling an amazing achievement!”
Trustee
Helen is based in England and is Mum to William who was born
in 2007. William was diagnosed with Glut1 in 2010 aged 3.5. William has made great progress. He is seizure free and gains new skills all the time.
Ireland Representative
Meadbh is based in Ireland and is mum to Paul who was diagnosed in 2012 with Glut1 Deficiency when he was 5. He continues to adhere strictly to the Ketogenic Diet which has eliminated seizures and improved his quality of life.
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