(excerpted from a letter I received from Ms. Rooney several yrs ago. I have been intrigued by the possibility of URO 1 being useful in PD, though have not pursued this avenue of inquiry. Michael's notation of protoporphyrin reminded me that this info was out there. This researcher /patient was interested in URO I for ALS. As to the usefulness/veracity of the infomation, I am clueless. Perhaps someone on this forum will be interested in determining if the info has any potential. madelyn)

"...because there really is a potent natural neuroprotector produced by the human body that has been successfully tested millions of times with very few problems but it continues to be overlooked. All of our livers produce it It is called uroporphyrin I (URO I). I have been studying it for 20 years and have used it to halt my own progressive neurological deterioration which has major aspects in common with ALS. It's the good stuff that the liver produces to protect against the CNS damage that the neurotoxic stuff that the liver makes and we all need it to protect our CNS. It's much more complicated than that, of course.


iron porphyrin has been tested without success. URO I is not iron porphyrin. It is much smaller and is one of the largest natural molecules that crosses the BBB. There is new research out that recognizes that there is at least one component of heme synthesis that is an antioxidant, "DNA and mRNA elements with complementary responses to hemin, antioxidant inducers, and iron control ferritin-L expression" Korry J. Hintze* and Elizabeth C. Theil*†‡
*Center for BioIron at CHORI, Children’s Hospital Oakland Research Institute, 5700 Martin Luther King Jr. Way, Oakland, CA 94609; and †Department of Nutritional Sciences and Toxicology, University of California, Morgan Hall, Berkeley, CA 94720

It has been known for decades that the only hepatic porphyria that is not neurotoxic is porphyria cutanea tarda (PCT). It is also the only hepatic porphyria that is characterized by excess URO I. Conversely, the most neurotoxic hepatic porphyria is acute intermittent porphyria (AIP) which is the one characterized by the least URO I. Until my work, it was thought that URO I was useless. I think that the cause of sporadic ALS is that the BB has become inflamed for some reason, maybe infection or allergy, and prevents URO I from entering the CNS. I have therefore applied for a patent for it as a treatment for ALS. Lewy-like bodies may absorb it or block its entry in FALS.

I am not selling anything. I don't have any URO I and I don't know what the best dosage regimen is. I am asking only that it be tested. If nothing else, it could be tested on the compassionate use basis as it has been manufactured by several labs for lab experiments for other things for decades.
Roberta (Bobbie) N. Rooney

(Just reread Michael's post prior to this reply, and realize I must have read about protoporphyrin in one of the levels within the web link Michael provided; otherwise the above is a non sequitur. madelyn)