There used to be just one major PXE organization in the USA called NAPxE, with Dr. Kenneth Neldner from Texas Tech at the forefront. He's the one who requested blood samples from around the country and had them sent to Harvard to help identify the gene mutation(s) responsible for PXE. Although he was only a graduate student at the time, the person who did most of the painstaking work was Berthold Struk from Germany.
Terry wanted to be in charge of NAPxE but she never won the votes. She eventually founded her own group.
She visited Struk at his Harvard lab and later, about the time that Harvard published their results, researchers at Hawaii (coming out of nowhere) published similar results. Struk accused Terry of stealing data and sending it to them, but I don't think it was ever proven.
Terry never discovered anything herself. She was never a scientist!
Upon getting the patent, which flabbergasted many people, there was a natural tendency for researchers to seek permission from her due to the patent. I don't think money was ever involved, but Terry's name often appeared on their various research papers thereafter.
The most appalling aspect of it all was that she long argued her main reason for seizing the patent was to prevent others from exploiting it for financial reasons. Well, if NOBODY could hold a patent as the ACLU argued, then that wouldn't be a problem. Yet Terry argued against the ACLU position. That revealed her desire to maintain the patent and it showed her previous "explanation" was a lie.
I certainly don't think she's all bad! I give her major kudos for promoting greater awareness of PXE (and now other genetic diseases), her organizational skills and her money-raising efforts, but it was pretty ugly how everything transpired.
NAPxE still exists, but it's on life support. The (blind) President of that group allowed their old web page to expire, and supposedly Terry quickly bought the rights to it before NAPxE realized the oversight... like she was hovering around awaiting the opportunity. So there's some persistent vindictiveness if that's true. NAPxE then created a new web page, but it doesn't get updated very often anymore.
EDIT: It's also not in my best interest, as a person with PXE, to dissuade people from donating money for research into the disease, so I wouldn't want to modify the Wikipedia page for that reason too.
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