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SPSRF Blog

The 2024 SPS Symposium offers an exciting opportunity to connect with fellow patients, caregivers, and the top medical professionals in the field of SPS.

Stiff person syndrome is a neurological and autoimmune disorder that can cause excruciating muscle spasms and rigidity. We still don’t know exactly what causes it.

Your support has been our guiding star, and we're excited to share the latest stories, insights, and opportunities to make a difference. Each section aims to provide a richer understanding of our current endeavors and where your invaluable support is taking us.

We have tons to share this month, so let's get started!

We're thrilled to bring you our latest updates and delve deeper into the strides we've made together. Each section below aims to provide you with a richer understanding of our current endeavors and where your invaluable support is taking us.

We have a lot to share this month, so let's dive in!

My name is Rachel Hallstrom, and I'm a college student in Anchorage, Alaska. At eighteen, I was a picture of health, training for a triathlon and thriving on a Paleo diet. But everything changed when I began to experience alarming symptoms. It took seven months, countless misdiagnoses, and a trip to the Mayo Clinic before I finally learned I had Stiff Person Syndrome (SPS).

Hello, my name is Ann Thompson. I want to tell my story, not for sympathy but to remind other SPS patients that you are not alone. To remind you that you must advocate for yourself, seek answers, and not give up until you receive the care you deserve.

My name is David Axelrod. I reside in Milford, Connecticut, and work as a Senior Talent Acquisition Specialist. But to truly know me, you need to understand my journey - a journey defined by resilience and the will to overcome Stiff Person Syndrome.

This month, an inspiring conversation between Tara and Lea discussing life with SPS; we delve into the role of nutrition in managing SPS; and an update on our patient registry.

The latest updates from The SPSRF -- onboarding with NORD for the patient registry, the Northeast Stiff Person Syndrome Awareness Annual Conference, Super-75 Campaign, and more!

“When you hear the sound of hooves, think horses, not zebras.” This medical training applies well to most patients, but not the rare ones. Going into Rare Disease Day, the state of our herd is strong. And we continue to grow to cover more ground.

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.

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.

Giving Tuesday, Stiff Person Syndrome showing up on podcasts, Tough Mudders and more!

Stiff Person Syndrome patient, Steven S, shares the story of his experience and how his life has changed.

The compelling story of an SPS patient, a new study of SPS, and FRIENDraising.

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.

Meet the new SPSRF Medical Advisory Board! A crucial turning point in the grown and scientific trajectory of the foundation is the formation of this council of practitioners.

From joining NORD to joining the Northeast SPS Conference, this month was all about connecting.

Helping to create a fundraising program for The SPSRF gives me a sense of connection and purpose. The camaraderie of this small team is unmatched in any other work environment I have experienced.

Stress could be a trigger for SPS and SPS symptoms so this month's newsletter is filled with tips and info to stop the madness.

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.

On this Rare Disease Day, we are moving for all of those with Stiff Person Syndrome (SPS) who have difficulty doing so or who have reached the point in the disease that they cannot move.

Introducing Move4Rare - inspired by ultra athletes like Mary and Shane - just in time for Rare Disease Day, which you can celebrate with a soundbath!

Meet a rare baby with SPS and the aunt who is competing in Ultra Man races this year to raise awareness of the disease and funds for a cure.

We close out the year with audacious optimism - holding tight to the "why" we do this and finding strength and meaning from every one of you who supports the org.

This month feels like a tournament of Champions as we speak with ParaOlympian Alexandra Stamatopoulou, two generous gents run the NYC Marathon to raise awareness of SPS, and ... The SPSRF was selected to participate in Rare as One!

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.

This month we explore the power of Vitamin P, and how positivity and hope can make all the difference in facing a progressive disease.

Summer didn't stop us from having a great time at the PowerTrain fundraiser and learning why women are affected by autoimmune diseases more frequently than men.

“The only way that we’re going to push the needle forward is to have people like Tara, a patient, be an advocate for herself and others to build a philanthropy base to build research,” said Newsome. “Tara is a formidable force.”

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.

Your primary care physician is the quarterback of your medical care, whether you are healthy or suffering from a rare neurological disease. Meet Dr Saleh, who has some tips to help you find your best QB.

Meet Joy Lwangu, catch up on our FRONT PAGE STORY IN THE WASHINGTON POST, and find out what your donations fund right now.

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.

Honoring April, the National Month of Hope; Dr. Newsome answers your questions about the difficulties of getting diagnosed.

For International Stiff Person Syndrome Awareness Day, we're exploring science-backed, soothing therapies you might not have heard of like forestbaths, soundbaths, and mindfulness through touch.

In honor of International Stiff Person Syndrome Awareness Day, a public conversation with Dr Tara Zier - mom, dentist, CEO, SPS patient.

What happens when two women with SPS and black belts in karate get together? You get some great advice about how to weather living with a rare disease.

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.

Shane did it - he criss-crossed Tasmania to raise awareness and funds for SPS research and your support of him and the org made all the difference.

Wiring $40,000 to the Johns Hopkins Stiff Person Syndrome Center this week evoked an exhilarating feeling, a feeling that was unexpected that I’m still carrying. For those who have donated, you made that happen. Thank you from the bottom of my heart. I know you’ve worked hard for your money, and I am grateful for your generosity and trust. And if you have not yet given, there is still time!

Aaaannnd he's off! Shane, who has SPS, is running across Tasmania -- TWICE -- to raise awareness and funds for SPS research. You can get in on the action (on a more comfortable scale) by joining the #547Challenge.

Shane sent over his ideas for a route and it is the perfect expression of his kinetic energy and love of life, both of which propel him through this terrible disease of Stiff Person Syndrome (SPS).