PKAN (pantothenate kinase-associated neurodegeneration) is the most common form of NBIA. Based on the age of onset and rate of progression, individuals with PKAN may be classified as having classic or atypical forms. However, as we learn more about PKAN, we have found that some people fall between these 2 categories. In other words, there is a broad spectrum of symptoms.
The symptoms of classic PKAN usually start to appear before age 6, on average around age 3…
The symptoms of atypical PKAN are more variable than those of classic PKAN and appear at a later age…
Our team is currently developing a possible therapeutic for PKAN called CoA-Z. This compound was created through collaboration with Dr. Sibon in the Netherlands and we believe it may change the course of this terrible disease. Our goal is to make CoA-Z available to everyone at the lowest cost possible so we have formed sister non-profit foundations in the Netherlands and US to further develop the compound. The link above contains information about CoA-Z, the steps pending to get it to clinical trial, the cost associated with each step, and how you can send donations to the foundation.
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