Céline Dion Opens Up About Having Stiff-Person Syndrome. Here’s What To Know About This Rare Disease.

December 2022 – “I have no choice but to concentrate on my health at this moment, and I have hope that I’m on the road to recovery.” Céline Dion opens up about having Stiff Person Syndrome. Here’s what to know about this rare disease.

December 2022 – Entertainment Tonight, hosted by Nischelle Turner and Kevin Fischer, break down Celine Dion’s disclosure of her SPS diagnosis, including an interview with The Stiff Person Syndrome Research Foundation Founder and President, Tara Zier.

Fox News Tampa coverage of Celine's announcement she has SPS showing a still from her Instagram Story and a diagram of SPS symptoms

December 2022 – Singer Celine Dion shared a heartbreaking diagnosis with the world Thursday. She has stiff-person syndrome (SPS), an extremely rare neurological disorder, and as a result, she canceled her European tour.

Tara on the Parents As Rare podcast with Dadvocate Adam Johnson

September 2022 – “We have become closer through this,” The SPSRF founder Tara Zier tells “Dadvocate” Adam Johnson in this Parents as Rare podcast, an unvarnished look at life as a rare disease patient.

March 2022 – A thoughtful interview about invisible disabilities that we hope will help the next person get a proper diagnosis, find good doctors, and discover new purpose. 🙏 Many thanks to Jess Stainbrook, Invisible Disabilities Association for shining a spotlight on SPS.

February 2022 – February 28 is Rare Disease Day: the perfect time to bring you encouraging news Dr. Tara Zier’s foundation which recently landed a large grant through the renowned Chan Zuckerberg Initiative to help her group push for better treatments and maybe, one day, a cure.

Fall 2021 – Buffalo Healthy Living featured a piece where Anna B opens up about living with Stiff Person Syndrome and her strategies for carrying on in the face of a little-known progressive autoimmune disease.

Tara featured in the Virginia Commonwealth University School of Dentistry Alumni Magazine

Summer 2021 – The Virginia Commonwealth University School of Dentistry featured Tara and her story in their Summer 2021 Alumni issue to help raise awareness and funds for research into Stiff Person Syndrome.

Washington Post article by Sandra Boodman - Dentist's Viselike Pain Signaled Nearly Invisible Disorder

May 2021 – Medical Mysteries’ Sandra Boodman covers how doctors’ skepticism of Tara’s anxiety almost led them to miss that her viselike pain signaled a nearly invisible disease — Stiff Person Syndrome.

February 2021 – Dr. Maggie Yu discusses the role trauma plays on triggering the immune system, the struggle to get diagnosis, the empowerment it takes to find and partner with functional and holistic providers with Tara Zier.

Bethesda Living features The Stiff Person Syndrome Research Foundation founder Tara Zier and her insight into The Awareness You Need: Stiff Person Syndrome

February 2021 – Bethesda Living turns to The Stiff Person Syndrome Research Foundation founder Tara Zier for insight and explanation of The Awareness You Need: Stiff Person Syndrome.

Shane James finishes Traversing Tassie, running over 500 miles to raise awareness and funds for The Stiff Person Syndrome Research Foundation

January 2021 – On the opposite side of the world, 52-year-old ultra runner Shane James completed a 24-day trek Friday to benefit a foundation in the DC region, hoping to find a cure for a rare disease he shares with Dr. Tara Zier of Bethesda.

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          January 2021 – Southern Cross TV covers the penultimate day of Traversing Tassie, ultra-runner Shane James’ epic 880km run to raise awareness and funds for The Stiff Person Syndrome Research Foundation.

          Shane James completing the first leg of his Traversing Tassie (TTX2) fundraiser for The SPSRF - story in The Examiner

          December 2020 – The Examiner covers Shane James’ milestone of completing the first leg of Traversing Tassie – running from Burnie to Eddystone Point – in eight days.

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                  December 2020 – Voice of America covers Shane James’ and Tara Zier’s partnership to create Traversing Tassie and raise awareness of Stiff Person Syndrome worldwide.

                  Kensington Neighbors article

                  November 2020 – Kensington Neighbors features Tara as an Expert Contributor with the article on Stiff Person Syndrome: Silly Name, Serious Disease!

                  RUNNING FOR RESEARCH: A new Stiff Person Syndrome research foundation has motivated Shane James to take on a new challenge. Picture: Brodie Weeding

                  October 2020 – The Advocate of Australia wrote the first story about Shane James’ historic race, Traversing Tassie, and his plan to donate all proceeds to The SPSRF.

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                          April 2020 – Interview on Facebook Live announcing the launch of The Stiff Person Syndrome Research Foundation website, www.stiffperson.org

                          Tara Zier and her children

                          April 2019 – The Mayo Clinic published a story about Tara’s frightening and frustrating search for the right diagnosis after she was transported to its Minnesota headquarters by air ambulance.

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                                  May 2018 – ABC7 in Washington, DC interviewed Tara and her neurologist at Johns Hopkins about the role trauma plays in triggering auto-immune disease.