STAT News covers another instance of citizen-funded research, this one for a major kidney disorder:
Then, three years ago, the parents of a 1-year-old girl in Brazil with nephrotic syndrome reached out to Riella. The girl’s condition had failed to improve with conventional treatments. Her parents had read that modified diets had helped others, and wondered if their daughter’s disease might be related to food sensitivity. They asked a doctor in Brazil to guide her through a new diet.
Within two weeks, the girl’s kidneys all but stopped leaking protein, and she effectively went into remission. Her parents were ecstatic, but they also wanted the medical community to better understand the mechanisms of this intervention, in hopes that doctors would embrace it as a treatment.
They were prepared to anonymously fund a research trial, but they wanted it done quickly.
As in this summer.
And apparently, it’s really happening. Somehow, some way, a bunch of MDs, PhDs and RDs from Harvard/Brigham and Women’s Hospital are studying dietary effects on autoimmune disease. I’m a little shocked.
Though I’m less shocked after reading the family’s statement on the study’s website.
We believe that reaching the real cure can only be achieved through love, dedication, and pursuing the unknown with a true belief and faith. […]
Since we understood the Nephrotic Syndrome (FSGS) and how difficult it is to treat it, we started to focus on different approaches. In this way we received a gift when we realized that food is the basic building block of life,so we knew we had to pay attention in the deepest way possible to know what we are giving to our child in terms of a daily diet.
Understanding that relationship,we started to work on the right diet, which was key to improving our daughter’s condition.
The link between several autoimmune reactions such as the inflammatory condition that we see in some cases of Nephrotic Syndrome (FSGS) is related to food intolerance and allergies that were present in our own case and could be present in many other cases that are difficult to treat.
The Gluten-Free, Dairy-Free diet has changed our daughter’s life, reducing her proteinuria levels by almost 90% since she was diagnosed and giving us the ability to see all the changes, and allowing us to reduce the amount of daily drugs that we had administered for the prior 3 years, including the complete elimination of steroids.
Love, independent money, and sincere belief in the truth. Those three things are going to get us more usable data than the last 100 years of dietary studies combined.
As someone who has struggled with an autoimmune condition for most of her life, and who knows how much diet plays a role in how our bodies function, I see a vast swath light opening up over this field of research. So much of what we know about diet is shrouded in the dark, swirling clouds of political policy, lobbying, and corporate interest.
The USDA messes with our basic food guidelines. Big Sugar funds studies that somehow, and no one knows why, declare sugar innocent of all possible wrongdoing. And people everywhere are killing themselves unwittingly, because they trust the authorities in “Science.”
Knowing what I know about the gluten and casein proteins, I have no doubt that The Genie Study will be successful. I can only pray that it will open further avenues of investigation, and open more eyes in the Medical Establishment to the true utility and beauty of a good diet.
If you’re interested in this type of research, check out NequalsMany.com, because participating in citizen-sourced, citizen-funded research is fun.
We’re enrolling participants until August 12th!
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