(Evaluations of the discoveries of the Laboratory for Familial Dysautonomia Research at Fordham University, directed by Dr. Berish Rubin, given anonymously for publication by some parents of children born with FD who have given these two natural compounds to their children, treatments which grow the missing protein in their neurological systems.  These discoveries are expected to also aid in the treatment of other diseases, such as certain types of breast cancer, cystic fibrosis, and Fanconi Anemia.)

 *“She used to have retching and nausea most mornings which is now virtually nil since she has been on the tocotrienols and green tea.”

 *“The only thing I can do as a mom is support research that will find a CURE, such as the research of Drs. Rubin and Anderson at Fordham University that has already found treatments aimed at  preventing the progression of FD and the potentially fatal crisis episodes (EGCG and tocotrienols). Drs. Anderson and Rubin have been able to provide specific treatments, supplements and dietary guidelines, that are well-tolerated by my kids and have decreased the frequency of their crisis episodes. Whatever the statistics show, this is something real and tangible that I know is helping my children.”

“Before we started on the tocos diet and green tea, my son was a medical mess.  On a lot of oxygen and breathing equipment at night, low, low BP, recurrent corneal abrasions, having difficulty learning how to read etc.  Across the board he was struggling through each day.  Since we started on the Tocos and then the Green Tea, this has all changed.  He is off all equipment at night, on NO oxygen at all!  His has not had an abrasion in 1-1/2 years and his vision has improved a little.  He is mainstreamed in a regular school, has learned how to read and write Hebrew AND English!  His BP and Blood Glucose has stabilized, and he has gained and grown more in the last year than he did in the preceding 4 years, put together. I have also noticed that he now feels pain.”

*”Since switching to the Green Tea capsules, he has stabilized even more.  He has literally gone from a child who we didn’t know how he would be from day to day, to one who's body is much more reliable.  And of course, that means we have a more energetic mom as well!”

 *“We are re-starting the green tea powder after taking her off it when there was only the liquid due to ill side effects.  She has been on the tocos for quite some time and we saw some nice results with them.”

 *“Wow!  Since using the powder, she has grown over an inch at this point--after not growing for over a year. She is accelerating in her school progress, now on grade level in all classes, with her reading improving two grade levels since the start of the year. She is much more energetic and mentally sharp, with no illnesses of any concern since the spring. With a household of bronchitis, she didn't even get a cold. She also plays the clarinet, and has moved up from the last chair, being very behind the other students, to preparing for the more advanced band next year.”

 *”He has most definitely had fewer crises since he began on the tocos and even fewer now with the green tea.  He has had the healthiest winter ever.    He has way more energy and I see him making leaps in his studies.  We have not had any tear production, but we have always been able to keep his eyes moist enough as long as he was well hydrated.    We are very pleased with both the tocos and green tea.   They make such a difference for him.”

 *”Our son has been on tocos and green tea since they first became available following the news that they increase IKAP levels. I believe both compounds keep him out of crisis.Indeed, at the moment, he has strep throat, a sinus infection, and something respiratory requiring nebulizer treatments. But he is not in crisis, at all. (Just miserable like a normal sick kid.)

When he doesn't have an infection, which is most of the time, he feels so terrific that I start to forget what crisis is like, even though he suffered multiple daily crises around the clock for more than half his life. He never, ever retches any more, not even in the morning or under any other stress. He also does not get blotchy or sweaty anymore. And his eyes look very moist.  

He went from falling off the normal growth chart to weighing in just under the 50th percentile and height at 25th percentile.   For our son, the tocos and EGCG are like a miracle.”

*”I have been thinking about life before the findings of Berish Rubin & his team.  Our son was in constant crisis.   He had no energy or zest for life.  In short, he was a mess with not much quality of life.  In fact, most of his life was spent asleep from the effects of all the medication pumped into him.

Since being in touch with Fordham life has much improved for him and us as a family. The use of Tocos and Green Tea has made a dramatic difference in his health, both physically and mentally.  Berish Rubin  is compassionate, helpful and most importantly, he will always give his time to any child who is suffering.  His knowledge is our gain.”

*”By my reading, and experience, both tocos and EGCG are objectively helpful, and they have made a tangible, positive difference in my daughter's overall health and severity of illness.”

*”I applaud Dr Berish Rubin & his team for their constant persistence in the hope of providing our kids with a better quality of life.   The speed in which they are finding out more & more shows their passion and genuine concern for our children.”

 *“My daughter started taking the tocos a few years ago.  From a tearing level of three {children with FD have no tears and suffer from frequent abrasions on the eye and sometimes loss of sight} she improved to a level of 15.  Now she takes no drops at all and her eyes are wet all day.   I believe the tocos have made all the difference between a nagging mother, always after her to take her drops...and a burdened person because she needed the drops very often.  Now she takes no drops, unbelievable!”

 *“We just want to thank every member of Dr. Rubin’s Lab for all the work they have done.  Your findings have allowed our daughter to be the... curious toddler she has become.”

 (The above are representative excerpts from many evaluations of the therapies from Dr. Rubin and the Fordham Lab, made anonymously by parents of children with FD.)