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A billionaire with Progressive Supranuclear Palsy funds consortium to research tau protein disorders
Iris L.
Posted: Monday, January 26, 2015 10:22 PM
Joined: 12/15/2011
Posts: 16084

Team works to find a treatment for a rare, deadly disease

FORT WORTH, Texas — Shortly after Richard Rainwater was diagnosed with a degenerative brain disease in 2009, the billionaire Fort Worth investor gathered with family members and a team of doctors in New York to learn more about progressive supranuclear palsy.

The facts were sobering. There were no cures and no proven treatments for PSP, a rare and fatal disorder that only affects about 6 in every 100,000 people. Initially, patients typically have problems with their balance or show personality changes. Eventually they lose the ability to speak and swallow.

But Rainwater, who made a name for himself in the business world as a bold dealmaker with an eye for attracting top talent, wasn't about to give in.

"I remember, during a break, Richard looked at me and said, 'If money can beat this thing, we're gonna beat it,'" said Walter Rainwater, Richard's brother.

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I wonder if they are looking into any alternative therapy modalities, such as aromatherapy?

Iris L.

Posted: Wednesday, January 28, 2015 10:34 PM
Joined: 1/21/2015
Posts: 107

Iris, I will follow this with interest. The condition may be very rare, but it has happened twice in my family in the last couple of decades. My uncle by marriage came down with it and passed away about 20 years ago..Af first they thought it was Parkinsons, but then changed the diagnosis. Then about 10 years ago, my aunt (blood relative, but not the wife of the "uncle") had PSP and passed away after a short time. I think it is very "interesting" (if that's the word) that two such rare conditions happened in one family. Now my own husband has been diagnosed with ALZ, although I am seeing some signs pointing to Lewy Body Dementia. So many of these diseases are so closely related and mimic one another. They are ALL awful!

Mimi S.
Posted: Thursday, January 29, 2015 8:11 AM
Joined: 11/29/2011
Posts: 7036

If you suspect there is more to his diagnosis, go to a good center. There is a great center in San Diego, if you are in Southern CA. and Stanford has a great research center if you are closer to there.

It is worth whatever inconvenience there is to get to a great diagnostic center.

Posted: Monday, March 2, 2015 9:07 PM
Joined: 3/14/2013
Posts: 348

Interesting article. My father died of PSP 4 years ago. I have always been suspicious that his case was related to a bout of encephalitis he had in 2000 (same time and area Liza Minelli had it), but I didn't know there might be a connection until long after his death - his neurologist never suggested anything like they and they know almost nothing about possible causes. Like ALZ, it's a slow and terrible disease.
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