Social media effort brings hope to Minnesota families facing PSP - KTTC Rochester, Austin, Mason City News, Weather and Sports

Social media effort brings hope to Minnesota families facing PSP


It's a rare disease impacting families in our area, as well as the physicians who care for them.

Progressive Supranuclear Palsy (PSP) currently has no cure and appears in roughly three to six people per 100 thousand. 

"One of his hallmarks is he's just a brilliant guy, and that's what's so kind of cruel about this," Jean Locke told KTTC's Caitlin Alexander. 

Jean and her husband, Rick, just celebrated 29 years of marriage in October. 

Her husband is a physician, researcher, golfer, and father of two adult children. However, following a PSP diagnosis, he is unable to verbally share much of what he knows, despite maintaining mental acuity. 

The PSP diagnosis came only a few years after Rick suffered a stroke.

Many PSP patients pass away within three to 10 years of onset. 

Rick and some other PSP patients seek help in Rochester, Minn. at Mayo Clinic. 

"Progressive Supranuclear Palsy, or PSP, is known as one of the prime of life diseases, because it starts to affect people in the 50-80 year range," said Mayo Clinic Professor of Neurology Dr. Bradley Boeve.

It affects balance, vision, and motor functioning. Some symptoms can appear similar to Parkinson's disease. 

PSP has no primary treatment, as well as no cure.

Dr. Boeve explained PSP is caused by an abnormal accumulation of a misfolded protein known as tau.

That is where the need for funding and research comes into play.

"Can we slow down the rate of progression or halt progression? That's the more immediate goal," Dr. Boeve said.

The research piece is very important to many PSP patients' families. 

"You initially get a diagnosis of something that is terminal. The whole narrative changes when there is a possibility of a cure," Locke said.

It can be difficult to fundraise for a disease not many people know about. 

However, as proven by the recent ALS Ice Bucket Challenge, social media can change that. The Ice Bucket Challenge supported funding for the fight against Amyotrophic Lateral Sclerosis.

"What has happened in the ALS area, very successful fundraising effort has really stimulated research, as well as treatment. There's a new treatment for ALS, and the hope will be the same for PSP," Dr. Boeve said.

Now, there is an online push called, "Pies for PSP." People take pies in the face, post the clips online, and donate to support CurePSP.

"In this whole journey, you have to find some humor and something a little more lighthearted, and Pies for PSP is that," Locke said.

An organizer on Pies for PSP's Facebook Page agreed, saying via message, "The thing we have loved seeing the most from this mission are the smiles and laughter from the pie videos, which is very needed in such the heavy and trying times this disease brings!"

"There's hope. There are so many things to do in life that we need to take advantage of, even in whatever time we have," Locke said. 

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