Rare Opportunity for New Organization Focusing on National Rare Disease Day to Make a Difference: the Remi Savioz Glut1 Foundation is Creating an Awareness for Children Who Suffer From Glut1 DS

    WEXFORD, PA, February 27, 2011 /24-7PressRelease/ -- The Remi Savioz Glut1 Foundation was founded in January of 2010 by the parents of Remi Sophia Savioz. after an exhausting search that lasted over eight years, Remi was finally diagnosed with the rare brain disease Glucose Transporter Type 1 Deficiency Syndrome. The disease is detected by doing a spinal tap and testing to see if there is a relatively low amount of glucose present in the spinal fluid -- which reflects brain energy supply -- compared to the glucose in a person's blood.

Confirmation is done through genetic testing, thanks to Dr. De Vivo's 1998 identification of the first of many gene mutations that cause the disease. Ninety percent of them, like Remi's, occur without being inherited from the parents.

In order to create an awareness of the Glut1 DS the Remi Savioz Glut1 Foundation and NORD will celebrate, "Rare Disease Day 2011" on February 28, 2011. The Remi Savioz Glut1 Foundation is asking that the nation join them in a "Clicking Campaign" on Facebook to create an awareness of Glucose Transporter Type 1 Deficiency Syndrome.

Samra Savioz (Remi's mom) says, "If we can ask the public to take a moment to post our plea on their Facebook walls and spread the word about Glut1 DS we have an opportunity to help another child in hopes that they will be diagnosed early and not suffer like Remi."

Savioz says, "Remi has declared a battle with Glut1 DS and we are simply here to advocate for her as she fights her disease."

Remi is positive and engaging as she is left to eat the fat that is fueling her brain. If you ask Remi what she eats now to get her fat, she will pull out a 64-ounce plastic bottle of Crisco Pure Canola Oil -- one of about two such bottles she goes through every month. From the bottle she'll regularly down a couple grams of the oil if she needs to balance a meal.

Other options are more appetizing -- but not by much, since the menu is so limited. A regular snack is sliced cucumbers -- one of the few foods she can eat as much as she wants -- dipped in fatty ranch salad dressing.

Remi, is a funny and gregarious girl who likes to play games on the Internet and swim at her local pool, still has difficulty talking. She is still trying to learn to read and is not functioning at her age level, and may never, her parents acknowledge.

But the dramatic improvement in her abilities in the three years since her diagnosis made her parents realize that it is possible to see an improvement in the lives of children who suffer from Glut1 DS.

For information visit the foundation website at- http://www.remisglut1foundation.com or email the foundation at [email protected].

Remi Savioz Glut1 Foundation is a non-profit charity raising awareness, and money for research and education that will eventually lead to a treatment/cure for the rare brain disease Glucose Transporter Type1 Deficiency Syndrome.

Please contact us at [email protected] or at 724-272-8797.

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