SPS Patient Resources
Explore the resources and links below to find valuable information on Stiff Person Syndrome. These resources include curated literature and publication reviews, informative videos, reputable medical institutions, organizations, and online support groups to help you stay informed and connected.
We’re excited to share a SPS patient resource presented by Dr. Tara Zier at the 2024 SPS Symposium: the SPS Self-Care Toolbox.
This resource highlights practical strategies for individuals living with SPS to manage their symptoms and improve overall well-being.
This “toolbox” is all about finding personalized remedies to address physical, emotional, and lifestyle challenges.
Dr. Zier emphasized that, like a toolbox filled with different tools, SPS management often requires a multifaceted approach tailored to your specific needs.
Some key takeaways from the Self-Care Toolbox include:
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Medical and Psychological Support: Trust your care team and explore emotional support like trauma therapy and EFT tapping.
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Education and Advocacy: Equip yourself with knowledge about SPS and advocate for your care needs.
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Lifestyle and Therapy Adjustments: Incorporate evolving physical therapy and dietary changes.
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Mindfulness and Social Connections: Manage stress, practice mindfulness, and connect with others for support.
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Purpose and Resilience: Find a personal purpose to stay motivated and focused, no matter the challenges.
Download the Self-Care Toolbox PDF to explore these strategies at your own pace.
You can watch Dr. Zier’s full presentation and access the accompanying resource.
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We’re excited to share the release of our new tri-fold brochure, created for newly diagnosed SPS patients and their families. This resource offers a clear, compassionate introduction to Stiff Person Syndrome and the mission of The SPSRF, helping patients and caregivers feel informed and supported from the start.
You can view and share the digital version here: https://stiffperson.org/what-is-sps-digital
The PDF version is available here for download.
We’re excited to share the release of our newly updated infographic covering SPS. You can view and share the Infographic PDF here: https://www.stiffperson.org/what-is-sps-Infographic
Our "Ask the Doctors" section provides valuable insights from leading neurologists and primary care physicians on Stiff Person Syndrome (SPS). It features answers to common questions about symptoms, diagnostic tests, treatment approaches, and the genetic aspects of SPS.
The page includes contributions from experts like Dr. Scott Newsome, highlighting their extensive experience and research. Visit the page to gain a deeper understanding of SPS from medical professionals and explore patient stories and expert advice.
Access the information and videos here.
The Stiff Person Syndrome (SPS) Physicians Directory is designed to help you find healthcare professionals experienced in treating SPS worldwide. Please note that these physicians are not affiliated with The SPSRF, and we are unable to schedule appointments on your behalf. This directory is regularly updated, so we encourage you to visit frequently for the most current listings and to find the support you need.
Review the directory here.
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Click here to review our curated collection of literature and publications focused on SPS research.
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Explore our new podcast hub—your direct line to the world’s leading experts on Stiff Person Syndrome. In each episode, we sit down with neurologists, researchers, and clinicians to discuss the science, challenges, and breakthroughs shaping the future of SPS diagnosis and care.
Listen to our podcast series here.
Preparing for your next doctor’s appointment? The SPS Face Sheet Template can help you stay organized and make the most of your time with your physician.
This tool was designed to summarize your key medical information so doctors can quickly understand your condition, history, and medications. Preparing in advance allows you to focus on what matters most during your appointments—discussing next steps, like tests and treatment plans.
You can download the SPS Face Sheet Template here.
What the SPS Face Sheet Includes:
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Personal information, primary doctor contact details
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Past medical and surgical history
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Current medications (including supplements)
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Past medications
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A history of present illness to outline symptoms, tests, and progression
Tips for Using the Face Sheet:
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Keep it updated as your information changes.
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Bring two copies to every appointment—one for you and one for your doctor.
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Use it as a quick reference for new specialists or emergency visits.
How do you prepare for your appointments? Share your tips below to help others get the most out of their doctor visits!
Disclaimer: The content of this Website is provided for informational and educational purposes only, and does not in any way intend to substitute for professional medical advice, diagnosis, or treatment. The content is not intended to be medical advice for any particular person or patient and should not be relied upon as medical advice. You should always seek the advice of a physician or other qualified healthcare provider for medical advice, including any questions you may have regarding diagnosis or treatment of any medical condition.
Contributors to this document include: Jim Weiss, MD; Vered Lewy-Weiss, MD; Tara Zier, DDS and SPS patient.
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Living with SPS can feel overwhelming, but taking charge of your journey is key to managing both your health and daily life. That’s why we’re excited to share the SPS Tipsheet, a practical guide created to help you advocate for yourself, navigate medical appointments, and organize critical information.
Download the SPS Tipsheet PDF here.
What’s inside?
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Tips for creating a Face Sheet to keep doctors up to speed quickly.
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Guidance on finding a superstar primary care doctor and specialists.
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Insights into financial resources, insurance navigation, and workplace accommodations.
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Ideas for organizing medical records and communicating effectively with healthcare teams.
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Strategies for handling the dreaded “How are you?” conversations and asking for help when you need it most.
This resource is designed to give you actionable steps to feel more in control and supported every day.
Have you found specific tips or strategies helpful in managing your SPS journey? We’d love to hear from you!
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We know that mobility challenges are a significant part of living with Stiff Person Syndrome (SPS), and finding the right resources to access mobility aids—like wheelchairs—can feel overwhelming.
To help, we’ve put together a resource guide (linked here as a PDF) with practical information on:
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Organizations to contact: Programs and groups specifically geared toward helping individuals with disabilities access wheelchairs and other mobility aids
In a future version, we'll add more information such as:
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Where to start: Steps to explore insurance, financial assistance programs, and nonprofit organizations that can help cover the cost of a wheelchair.
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Tips for navigating the process: What to expect when working with insurance providers or seeking support from charities.
We hope this guide provides a helpful starting point and makes the process of finding mobility solutions a little easier.
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Every journey is different, every experience unique. The diagnosis of a rare disease — and being one-in-a-million — can feel isolating. Read our collection of SPS Patient stories and videos, submitted by members of our global community, here.
Your willingness to share your narrative creates a connection that will build the community so we can all support each other as we endeavor for better treatments and a cure for SPS.
We wanted to highlight a few patient-driven platforms where you can learn more about individual journeys with SPS. While these resources are not affiliated with The Stiff Person Syndrome Research Foundation (The SPSRF), they provide an inspiring glimpse into the strength and resilience of the SPS community:
Patient Websites and Pages
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My Life with Stiff Person Syndrome (Facebook Page)
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Stiff Person Syndrome (Facebook Page)
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Larry B. Mellick, MD – YouTube Video About a Patient’s Experience with SPS (YouTube Video)
These platforms:
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Offer real, personal perspectives on living with SPS
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Educate others by raising awareness about SPS symptoms and daily challenges
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Inspire connection through shared experiences
Why does this matter? Personal stories can help others feel less alone, educate friends and family, and increase broader awareness of SPS in ways that clinical descriptions often can’t.
Have you shared your SPS story online? How has hearing someone else’s journey helped you or a loved one
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Living with SPS can feel isolating, but you are not alone. Many individuals and families affected by SPS have created spaces to connect, share experiences, and support one another.
We’re sharing a list of Facebook Support Groups that you may find helpful. While these groups are not affiliated with The Stiff Person Syndrome Research Foundation (The SPSRF), they offer valuable opportunities to engage with others who understand the challenges of SPS:
Facebook Support Groups:
These groups can provide:
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A space to share personal experiences
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Practical tips for symptom management
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Emotional support and understanding
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Connections to others navigating similar journeys
If you’re looking for a way to share and learn from the community, these groups may be a great resource. Please remember to engage respectfully and safely, and note that advice shared in these spaces is not medical advice.
Have you found online support groups helpful? What topics or discussions have been the most meaningful for you?
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