Glut1 DS non profit organization, The Remi Savioz Glut 1 Foundation Home

Mission Statement

The mission of the Remi Savioz Glut1 Foundation (RSG1) is to fund research, awareness and education of Glucose Transporter Type 1 Deficiency Syndrome (Glut1 DS) and Glucose Transporters which affect the treatment of cancers, epilepsy and diabetes. The RSG1 Foundation will provide assistance and support to its broad patient community by providing educational tools for students and school districts that teach children to make a positive impact and teach adults about rare diseases through our “Kids Helping Kids” and “Learning in the Lunchroom Programs.” RSG1 will also provide patient assistance programs for children in the Pittsburgh, PA community and other regions with our “Scales for Patients Program.” RSG1 will continue to develop and fund programs in Pittsburgh, PA for children with rare brain diseases and children that suffer from epilepsy that are non-responsive to traditional drug therapy. The RSG1 will provide funding for the RSG1 Brain Fund at Children’s Hospital of Pittsburgh to better serve patients and the medical community at large. The Foundation will continue to work towards its mission until no child remains without a treatment, cure, proper diagnosis or whose lives are improved and enriched by our efforts.

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Projects in 2012

A Glucose Transporter Symposium, which will include a group of domestic and international experts that specialize in the field of Glucose Transporter research, Summer of 2012;

An exhibit booth at the 2012 Annual American Academy of Neurology’s Conference. The mission of the AAN: “The foundation exists to further the goals of the American Academy of Neurology by supporting education and research in neurology, and is dedicated to improving patient care, quality of life and public understanding of brain and other neurological disorders.” (We will also be funding a project to coincide with the Conference); and

An online domestic and international Glut1 DS Community with NORD and EURODIS.

A developing partnership with Children's Hospital of Pittsburgh and funding the RSG1 Brain Fund at Children's Hospital of Pittsburgh.

The "Remi Savioz Glut1 Foundation" has been chosen to participate as a benefiting organization in the 2012 Highmark Walk for a Healthy Community, for their 10th Anniversary. Since its inception in 2003, the Walk has raised 4.6 million dollars for non-profit organizations across western and central Pennsylvania. The event will take place on May 19, 2012.

"Making A Difference" by working with other Pittsburgh based non-profits to enrich the welfare and well-being of the Greater Pittsburgh Community! Helping those that suffer, persevere!

On February 29, 2012 millions of people around the world will observe Rare Disease Day for the 5th year. This is the 4th year that the United States will join in.

The Remi Savioz Glut1 Foundation has joined forces with NORD, EURODIS and "The Global Genes Project" and the "Wear That You Care Campaign" and the "Walk A Million Miles For Rare Disease Campaign" that will all take place on February 29, 2012.

Background Statement
The Remi Savioz Glut 1 Foundation was founded in January 2010 by Samra R. Savioz, to raise awareness of the disorder, as well as to raise money to support much-needed research on the cause and treatment of Glut 1-DS. The Savioz family began this mission after being told by researchers that little could be done due to the lack of funding for Glut1 DS.

Community Vision

To empower youth so that they recognize who they are, what kind of impact they can have in their communities, what their values are, and how advocating for children with special needs (particularly those afflicted by rare diseases) through means of social awareness projects can develop a higher quality of life for everyone in the community.

Foundation Partners & Affiliates
The Remi Savioz Glut1 Foundation is proud to announce its partnership and affiliation with the United Way of Allegheny County, Pittsburgh Gives, The Pittsburgh Foundation, NORD (National Organization of Rare Disorders), Rare Disease Day 2011 and the Dick's Sporting Goods Pittsburgh Marathon and Childrens Hospital of Pittsburgh at UPMC.