Glut1 DS community

Glucose Transporter Type I Deficiency Syndrome (Glut1 Deficiency, Glut1 DS, G1D, or De Vivo Disease) is a genetic disorder that impairs brain metabolism.  Patients with Glut1 Deficiency have insufficient cellular energy to permit normal brain growth and function.

Child Neurology Society Conference by Allie published 2 months ago


Glut1 Deficiency Foundation

Exposition Summary Report

Child Neurology Society Conference

October 26-29, 2011

Savannah, Georgia
This was an excellent conference for the Glut1 Deficiency Foundation to participate in. Our booth was well located and we were warmly received by everyone. The folks representing the Child Neurology Society were particularly friendly and accommodat...

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Glut 1 in Norway by mummy_of_two published 4 months ago

In Norway there are 13 known persons with Glut 1, and two of them are mine! I'm a mummy of two adult girls who have been incorrectly diagnosed for 34 years. One month ago, I had a phone call from my girls doctor who told me that both have a new diagnosis called Glut 1. And, we can treat it!

I felt like I was climbing both Mount Everest and the K2 in one trip.

My girls are 34 and 29 y...

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Glut1 Deficiency Foundation by Glut1 Deficiency Foundation published 5 months ago


Some of the facts and faces of Glut1 Deficiency (G1D, Glucose Transporter Type1 Deficiency Syndrome, Glut1 DS, De Vivo Disease). Produced by the Glut1 Deficiency Foundation. www.g1dfoundation.org

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Dylan's Story by rdc-team published 5 months ago

Dylan has an infectious smile and touches many hearts. Dylan was born on April 26, 2004, full term, via C-section. At 10wks old Dylan had a febrile and generalized seizure lasting over five minutes. Dylan was brought to Children’s Hospital in Los Angeles, where a lumber puncture, CT of the brain and lab work was done. There was no known etiology for Dylan’s symptoms.

At eight months of age a...

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Patient groups

  • The Remi Savioz Glut1 Foundation

  • Milestones for Children

  • The Glut1 Deficiency Foundation

  • The Colleen Giblin Foundation

  • Matthew’s Friends GLOBAL

  • The Charlie Foundation

  • The Child Brain Foundation

More information about these groups

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Glut1 DS Recent Activity

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    Glut1 story from Scotland
    topic, published about 1 month ago

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    HI,
    Wanted to share this great article about a great family helping educate and spread awareness:

    http://www.arbroathherald.co.uk/news/local-headlines/mum_highlights_need_1_2107400

    Thanks to the Watsons!

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    Glut1 DS in Greece
    topic, published about 1 month ago

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    Hi Allie,
    it' s me again!
    we' ve already have an excellent neuro and a dietician that began the ketogenic diet. But my brother's baby its the only baby in Greece and I would like another opinion. He drinks in bottle Ketocal (ratio 4,5:1, 2ml liquigel and superamine with carnitine). He started...

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    FAST FACTS ABOUT GLUT1 DS
    document, published about 1 month ago

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    Summary of mechanisms and terms involved in Glut 1 Deficiency syndrome in lay language.

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    Sanford Rare Disease Day Symposium - February 25th
    topic, published about 1 month ago

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    Thanks to the Wienk family, the Glut1 Deficiency Foundation will have an exhibit booth at Sanford's 2nd annual Rare Disease Day Symposium on February 25th. Visit the link below to find out more and to see an agenda of the day's discussions:

    http://www.sanfordresearch.org/ClassLibrary/Page/Ima...

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    ❤ Some1 with Glut1 Rare Disease Day Campaign
    topic, published about 1 month ago

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    Hello,

    The Glut1 Deficiency Foundation is hosting a ❤Some1 with Glut1 campaign in conjunction with Rare Disease Day. You can read more about the campaign by following the link below:

    https://g1dfnd.ejoinme.org/?tabid=333204

    If you are interested in participating, please contact Glen...

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    Glut 1 Foundation Winter Newsletter
    topic, published about 1 month ago

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    Online here:
    http://www.g1dfoundation.org/g1dfoundation.org/Home_files/winter%20g1d%20news%20copy%20web.pdf

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    Question sent via e-mail about the ketogenic diet
    topic, published 3 months ago

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    Dear Glut1 community-

    We received this question via e-mail: Other treatment Ketogenic Diet? Alternative medicine? Food supplements? My 17 year old girl, diagnosed at age 14, could not stand the diet, too morally difficult.

    Any responses would be greatly appreciated.

    FYI: The original q...

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    Glut1 Deficiency TV story
    topic, published 3 months ago

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    Hello,
    I wanted to share this great story about a Glut1 Deficiency family and the ketogenic diet. Thank you to the Williams family for helping raise awareness and educate others!

    http://fox4kc.com/2011/12/15/unusual-high-fat-diet-keeps-metro-boy-healthy/

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    Question from another member about the ketogenic diet
    topic, published 3 months ago

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    "A doubt has arisen us in relation to foods that can be supplied in ketogenic diet. As you know this diet restricts the amount of carbohydrates that patients can eat , the question is ... if there are prohibited foods that can be calculated mathematically, logically in minimum amount, can not be ...

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    Winter 2011: Keto News
    document, published 3 months ago

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    A publication for the ketogenic diet from The Charlie Foundation