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Glut1UK

/Glut1UK
Glut1UK 2018-07-20T12:28:33+00:00

What is Glut 1 Deficiency?

Glut 1 Deficiency is a rare genetic condition that affects brain metabolism. It is caused by a mutation in the SLC2A1 gene which regulates the glucose transporter protein type 1 (Glut 1).  Impaired glucose transport associated with Glut1 Deficiency creates an energy crisis in the brain and often results in seizures, movement disorders and developmental delays.  The standard of care treatment is a ketogenic diet.  This low-carbohydrate, high-fat diet causes the body to produce ketones, which are used as an energy source by the brain and other tissues when glucose is limited.

Why Matthew’s Friends Glut 1 UK?

Matthew’s Friends is a registered charity that specialises in ketogenic dietary therapies for medical conditions including Glut 1 Deficiency. We have set up a small sub group called Matthew’s Friends Glut 1 UK so as to support the Glut 1 Community in the UK, whilst working alongside our friends in the USA at The Glut 1 Deficiency Foundation and other Glut 1 Deficiency Groups around the globe.

Our Matthew’s Friends Glut 1 UK mission is as follows:

  • To support those families in the UK that are affected by Glut 1 Deficiency.
  • To provide education and training in the treatment of Glut 1 Deficiency.
  • Raise awareness of Glut 1 Deficiency.
  • Help to fund research projects towards the treatment and cure of Glut 1 Deficiency.
  • Work with Glut 1 Deficiency colleagues around the globe.

Where does your money go?

All donations made in the UK will be used towards fulfilling our above mission, with an emphasis being on Research and we will liaise with The Glut 1 Deficiency Foundation to support research projects that are being carried out both in the UK and abroad.

To make a donation to benefit Glut 1D please visit:

https://www.justgiving.com/mfglut1uk

Initial Interest Statement

We have just returned from the 2nd European G1D Conference successfully hosted by Matthews Friends.

The Conference brought together countries from around the world, educating and supporting, bringing Professionals and families together with the intention of spreading knowledge of G1D, it’s treatment the Ketogenic Diet, and possible alternatives.

At the conference a new G1D European Federation planning meeting was held. A representative from Italy, France, Spain, Belgium, Poland, Denmark, Estonia, Germany, Russia, Finland, and the UK, came together to discuss issues surrounding G1D, set goals, and begin the early steps to get the initiative off the ground.

Whilst at this conference Trudy Morgan, G1D parent and the current European Glut1 Deficiency Foundation Outreach Director and Emma Williams MBE, CEO of Matthew’s Friends Ketogenic Dietary Therapies Charity, discussed moving forward the G1D community within the UK. Although Matthew’s Friends has been ‘ acting ‘ as the UK Group for a while obviously as a Ketogenic Diet Treatment charity, the group also has many other commitments, so they are keen to see an official UK G1D group started.

Trudy Morgan is now leading this initiative with any new independent group formed continuing to work alongside Matthew’s Friends and the Glut1 Deficiency Foundation. Trudy is looking forward to taking these exciting new steps both as a formal UK Parent organisation and an important part of the European Federation of G1D.

If you would like to help, or have further questions please contact: tmorgan@G1DFoundation.org

To view the full statement, please click here.

2017 Glut1 Deficiency Foundation Conference Summary Report

2017 Conference Summary Report

The Glut1 Deficiency Foundation is happy to announce the conference summary report from our meeting in Nashville. Kris Engelstad put together the presentation notes, the presenters reviewed them, and we have compiled them to share. We appreciate their help in providing this valuable resource.

Find the report at our website here.

We hope you’ll save the date to join us at our next biennial conference on Glut1 Deficiency.
2019 Glut1 Deficiency Foundation Conference

Glut 1 Session – Liverpool 2014 Global Symposium

For in-depth information and guidance regarding Glut1DS please visit the Glut1D Foundation USA website here:

https://www.g1dfoundation.org/