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Keep Swimming: The SPSRF Newsletter September 2021

Keep swimming

It’s rare that an article rocks me but this one did.

Here’s a powerful recap, written by @TheAddictsDiary:

“During a BRUTAL study at Harvard in the 1950s, Dr. Curt Richter placed rats in a pool of water to test how long they could tread water. On average they’d give up and sink after 15 minutes. But right before they gave up due to exhaustion, the researchers would pluck them out, dry them off, let them rest for a few minutes – and put them back in for a second round.

In this second try – how long do you think they lasted? Remember – they had just swum until failure only a few short minutes ago … How long do you think? Another 15 minutes? 10 minutes? 5 minutes? No! 60 hours! That’s not an error. That’s right! 60 hours of swimming.

The conclusion drawn was that since the rats BELIEVED that they would eventually be rescued, they could push their bodies way past what they previously thought impossible.

I will leave you with this thought:

If hope can cause exhausted rats to swim for that long, what could a belief in yourself and your abilities do for you?”

This reminds me of the phenomenon “medical hexing” or the “Nocebo Effect.” If a doctor tells you that you have a progressive disease that’s incurable, what does that do to your mind? The natural thought process would be, “Why bother?” “I’m going to get worse, so what’s the point?” The point is if you don’t have hope, nothing is possible. If you have hope, anything is.

FUNDRAISING UPDATE: Since last month we are 6K closer to funding Johns Hopkins first pilot study to find target treatments. We’ve raised over $78K for research and have $17K to go! Go Team Go!


When is $10 greater than $100?? Some quick fun fundraising math: it might seem easier to donate $100 once and be done with it…yet with the EXACT SAME EFFORT you can deliver a 20% GREATER impact on research funding with a $10 monthly donation (and it’s a smaller dent in your wallet right now).

Thank you, and keep swimming.

With gratitude,

Tara Zier

Patient Stories

Keep Laughing: Meet Darrell Cherry

While Darrell Cherry describes SPS as “serious and no fun,” one of his long-time coping mechanisms has been humor. We initially found Darrell through his funny, plain-spoken blog, “The Stiff Man.” Watch while he explains that if it seems he’s making light of a terrible situation, it’s an effort to make those around him – especially his wife and kids – feel better.

Ask the Neurologist

Keep Thinking Positively

“Take your Vitamin P.”  When Dr. Scott Newsome was in medical school, he heard a lecture that has always stayed with him. In our exclusive series of interviews with the top SPS neurologist at Johns Hopkins, Dr. Newsome describes how “positivity” makes a difference for his patients.


Keep Shouting

So many recent shout-outs to the foundation, from Virginia to New York to Montana!

Thanks to my alma mater VCU Dentistry for raising awareness for SPS! Unfortunately most patients with SPS are disabled and unable to work. I loved my career as a dentist and grieved the loss when I had to give it up due to SPS. But now I’m embracing my Chapter Two with the same gusto I gave to Chapter One.

BUFFALO HEALTHY LIVING Anna B, who wishes to remain anonymous, bravely shares her story. Many patients of SPS keep their diagnosis quiet for privacy reasons. But others are worried they’ll be doubted, or worse, discriminated against. Special thanks to publisher Annette Pinder for offering the foundation website as a resource.

MONTANA TV REPORT We were thrilled that Darrell Cherry told his local TV news station in Montana about the foundation. The news anchor comments, “I love how he’s made this story bigger than him. He wants people to be able to research this.” So true!