SPS Community Conversations

As we begin planning for the 2025 SPS Symposium—set for July 19-20, 2025—we want to hear directly from YOU, the SPS community! Your input will help ensure the event addresses the topics and questions most important to patients, caregivers, and advocates. What topics would you like to see covered at the 2025 SPS Symposium? • Are there specific areas of research or treatments you’d like to learn more about? • Would hearing about patient experiences or self-care strategies be helpful? • Do you want sessions focused on specific symptoms, medications, or clinical trials? This is YOUR symposium, and we want it to provide the most value to you. Whether it’s hearing from specialists, learning practical tips, or connecting with others who understand, your feedback will help us build an impactful and meaningful event. 📅 Save the Date: July 19-20, 2025📍 More details to come on attending in person or virtually! Drop your suggestions and ideas below! 

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. What the SPS Face Sheet Includes: • Personal information, primary doctor contact details • Past medical and surgical history • Current medications (including supplements) • Past medications • A history of present illness to outline symptoms, tests, and progression Tips for Using the Face Sheet: 1. Keep it updated as your information changes. 2. Bring two copies to every appointment—one for you and one for your doctor. 3. Use it as a quick reference for new specialists or emergency visits. You can download the SPS Face Sheet Template here: 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.

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. What’s inside? • Tips for creating a Face Sheet to keep doctors up to speed quickly. • Guidance on finding a superstar primary care doctor and specialists. • Insights into financial resources, insurance navigation, and workplace accommodations. • Ideas for organizing medical records and communicating effectively with healthcare teams. • Strategies for handling the dreaded “How are you?” conversations and asking for help when you need it most. 📥 Download the SPS Tipsheet PDF here: You’re not alone in this—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! Let’s keep this conversation going and empower each other. 💙 #SPSCommunity #PatientAdvocacy #TogetherForSPS 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.