Local rare disease non-profit lands major grant from the Chan Zuckerberg Initiative
Mark Zuckerberg and Priscilla Chan. Photo Credit: Devlin Shand for Drew Altizer Photography and CZI)

February 28 is Rare Disease Day: the perfect time to bring you encouraging news about a local group working to cure a 1-in-a-million disease. Last year, around this time, we told you about local dentist Dr. Tara Zier, who is battling a debilitating disease called Stiff Person Syndrome. Well, Dr. Zier’s foundation recently landed a large grant through the renowned Chan Zuckerberg Initiative. The grant will help her group push for better treatments and maybe, one day, a cure.

"It’s completely a game changer," says Dr. Zier from her home in Montgomery County. 

For Dr. Tara Zier, the emails are pouring in, her ‘To Do’ list getting longer for good reason.

Dr. Tara Zier at her home in Montgomery County. Photo by Jay Korff/7News{{ }}{p}{/p}
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“One of the hardest things is shutting it down because I’ll work until 1 or 2 in the morning," says Dr. Zier. 

Her non-profit, The Stiff Person Syndrome Research Foundation, recently awarded a sizable grant from the Chan Zuckerberg Initiative led by pioneering philanthropist Dr. Priscilla Chan.

Mark Zuckerberg and Priscilla Chan. Photo Credit: Devlin Shand for Drew Altizer Photography and CZI)

Dr. Zier says, “Am I pushing myself too hard? Is it going to impact my health in a negative way?”

Dr. Zier must remind herself every day to pace herself. Which, if you know her, isn’t always easy. This black belt and successful dentist of 20 years quit dentistry a few years ago to focus on her health after being diagnosed with Stiff Person Syndrome: a rare, progressive, autoimmune condition that attacks the nervous system, leading to debilitating pain from muscle spasms and rigidity.

Photo courtesy Dr. Tara Zier/The Stiff Person Syndrome Research Foundation{{&nbsp;}}{p}{/p}
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“I deal with fatigue and pain. It feels like a vice on my neck and back," says Dr. Zier.

SPS ravages the body, often leading to life-altering mobility and breathing problems.

Zier adds, “People have muscle spasms so severe they break bones and dislocate joints. And there have been a couple of times where I have come close to losing my mobility where I couldn’t climb stairs. That was scary.”

While the condition impacts mostly middle-aged women, SPS affects people around the globe, including this toddler in the U.S.

Photo courtesy The Stiff Person Syndrome Research Foundation

Zier says, “The reason they were concerned about her is she stopped crawling and her legs went rigid. That’s a big driver for me.”

Zier’s drive started a couple years back when she formed her non-profit to raise awareness and funds for earlier detection (average diagnosis takes 7 years), better treatments and a cure. In fact, the root cause of SPS remains a mystery.

“The holy grail for me would be not only to cure SPS but to find better treatments and cures for other autoimmune diseases, neurological diseases," says Zier. 

Zier's group now has helped in reaching her goals after the Chan Zuckerberg Initiative awarded her non-profit a $600,000 dollar grant.

“It’s Chan Zuckerberg. It’s the real deal," exclaims Zier. 

Priscilla Chan. Photo courtesy CZI.{{&nbsp;}}{p}{/p}
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The seed money allows her foundation to blossom by building a patient registry, hosting an international symposium while opening doors to support research projects like biomarker discovery work going on now at Johns Hopkins.


Zier says, “At some point I want the organization to go away because I want a cure and that would be the ideal.”

Zier says through diet, rest, meditation and more, she’s actually gotten stronger since her diagnosis.

Photo courtesy Dr. Tara Zier/The Stiff Person Syndrome Research Foundation

“Am I where I want to be? No. But I’m going to keep pushing to get there," adds Zier. 

For a person who was once told by a doctor that her pain was all in her head, she’s come a long way on a journey that’s far from over.

Zier concludes, “I’m not going to stop until we get a cure.”

If you'd like more information on The Stiff Person Syndrome Research Foundation you can click here. 

For more information on the Chan Zuckerberg Initiative and all the great groups being helped please click here.

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