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Green Tea & Brown Rice

Nutritional Supplements Continue to Bring Hope & Transform Lives

 

A young girl with Familial Dysautonomia rises up out of her wheelchair and spends the day shopping with her mother in Manhattan. A ten year old boy with FD spends six months in the hospital, his condition worsening, fighting to stay alive, and then suddenly gets well and walks out. Instead of failing to thrive, a baby girl with FD hits all of her developmental milestones on time; crawling, babbling, and growing. She shows no symptoms of her disease - she feels pain and cries tears. A thirty year old woman with FD can now feel the grass with her bare feet, has stopped taking the medicines she has taken her entire life, and is starting to date.

 

In dozens of FD families around the world, the progression of this degenerative neurological disease has been slowed and much of the suffering alleviated. No - it's not a new miracle drug, not faith healing. It's the result of an approach to disease called genetic nutritioneering, in which genetic expression is modified by nutrients.

The symptoms of FD are caused by insufficient amounts of a protein in neurons, the cells of the nervous system, called IKAP. A mutation in the FD gene results in a combination of normal and abnormal forms of the protein being produced. Sometimes the mutation is ignored by the cell's splicing machinery, and sometimes it is not. Genetic nutritioneering can be used to influence the cell to ignore the mutation a greater percentage of the time. It can also be used to increase production of the protein.

 

At the Laboratory for Familial Dysautonomia Research at Fordham University in Bronx, New York, analyses of hundreds of available nutritional compounds has so far turned up two nutritional supplements that influence the expression of the FD gene. In the summer of 2003, Professor Berish Rubin, who heads the lab, and Dr. Sylvia Anderson, who directs the lab, announced the first of the two compounds. The tocotrienol form of vitamin E, which is extracted from rice bran, causes the FD gene to express larger amounts of IKAP. In the fall of 2003, Rubin and Anderson announced that a substance found in green tea known as EGCG (Epigallo-catechin-3-gallate) causes cells to ignore the FD mutation by lowering the amount of a protein called A2/B1 in the cell.

 

Some children and adults with FD are able to do things they've never done before. A twelve year old girl began smacking every golf ball out of sight, and wondered aloud if she was dreaming. A cognitively-challenged six year old boy who used to walk around in a daze, bumping into walls, can now focus on what he is doing, and went from being unable to feel scalding water to refusing to get into a bath that he described as slightly too warm. A fifteen year old boy with an upper arm circumference the size of a boy half his age doubled its girth in three months. This evidence suggests that they are now producing significantly more normal IKAP in their neurons as a result of the increased expression of IKAP due to tocotrienols, and the increased proportion of normal to abnormal IKAP due to EGCG.

 

With funding from FD Hope, the lab continues its work. It is our hope that this work will conclusively increase IKAP levels and that someday soon, FD children and adults will have IKAP levels sufficiently high enough so that the disease no longer controls their lives. Together, we will silence the FD mutation.

 
 

New powdered form of nutritional supplement available

While most children with FD responded well to the green tea supplement (EGCG), a small subset of children had a difficult time tolerating the liquid form supplied by the Lab for FD Research at Fordham University. Unwilling to find this acceptable, Drs. Rubin and Anderson went back to the lab and reformulated the EGCG supplement as a powdered form, available in capsules. This new formulation is now well tolerated by those individuals who had developed stomach upset with the liquid form. The lab continues to provide the EGCG free of charge to the FD community. To order, please contact Ann Slaw at annslaw@comcast.net or 847-913-9377. All transactions keep confidential. Tocotrienols continue to be available over the Internet or in natural food stores. The Eab for FD Research recommends the Twin Lab's MaxiLife Brown Rice Tocotrienols, available in 50 mg capsules (60 capsules per bottle). Many FD families have found iHerb.com to be their preferred source of the Twin Labs product.

 

 

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