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We’re excited to share the November 2024 Newsletter with updates and opportunities to connect, engage, and contribute to our shared goal of advancing Stiff Person Syndrome (SPS) research and support. Your dedication and involvement are what keep us moving forward together.
Here’s what’s happening at The Stiff Person Syndrome Research Foundation:
BUILDING STRONGER PARTNERSHIPS FOR RARE DISEASE AWARENESS
In late October, The SPSRF's founder Tara Zier and board member Helena Zec participated in the 2024 Science in Society Meeting hosted by the Chan Zuckerberg Initiative (CZI), where they were inspired by powerful stories from other rare disease non-profit leaders and learned about innovative patient registries proving crucial for research breakthroughs.
At NORD's Breakthrough Summit, we listened in as NORD highlighted the launch of the Living Rare, Living Stronger study—the first in-depth research into the medical, social, and emotional impacts on rare disease patients and caregivers. You can learn more about this landmark study HERE.
Thanks to the dedication of organizations like CZI and NORD, our community is more empowered than ever to drive SPS awareness and research.
HELP US EARN OUR GREAT NON-PROFITS BADGE BY SHARING YOUR EXPERIENCE
We're only a few reviews away from earning our GreatNonprofitsbadge, and we need your help! Sharing your experience with The SPSRF can help us reach more families and advocates. Each review builds our foundation’s visibility and brings awareness to SPS. To add your voice, submit a review HERE.
Thank you for helping us showcase the impact we're making together!
JOIN US AND SUPPORT OUR MISSION TO END SPS.
MAKE A DONATION TODAY!
SPS MARKETPLACE: SHOP TO SUPPORT SPS RESEARCH
With the holiday season upon us, we’re excited to announce the launch of the SPS Marketplace! Explore products created by our community members to raise awareness and fund SPS research. From clothing to keepsakes, each purchase helps drive our mission to fund SPS research.
View the available items HERE.
SAVE THE DATE: 2025 SPS SYMPOSIUM
Mark your calendars! Our 2025 SPS Symposium will be held on July 19-20 in Windsor Locks, CT, and online. This annual event is an incredible opportunity to connect with others in the SPS community and engage with top researchers, healthcare professionals, and caregivers. Registration for in-person and online attendees will open on May 1st.
Keep an eye on our updates HERE as the agenda and room discounts are finalized.
PLEASE SUPPORT OUR MISSION TO IDENTIFY BETTER TREATMENTS FOR SPS!
JOIN US TODAY!
SPS COMMUNITY SURVEY: MAKE YOUR VOICE HEARD
As we continue to partner with research organizations, having accurate insights into our community size and needs is essential. We invite all patients, caregivers, and supporters to complete our new SPS Community Survey. Your input, which takes only 5 minutes, will help guide our future efforts in awareness and research. All responses are confidential.
Start the survey HERE.
VOICES OF SPS: MEET JOY LWANGU
We’re excited to re-share the journey of Joy Lwangu, an SPS patient from Kenya, where awareness and resources are especially limited. Joy’s story is one of courage as she faces challenges accessing treatments. Her words, “Death rates should not be what gets research funding… Quality of EVERY LIFE on earth is key,” echo the importance of awareness and research for diseases like SPS.
Watch Joy’s story HERE and join us in spreading her message.
Thank you for your continued support and engagement with The SPSRF. Together, we're building a brighter future for those impacted by SPS!
If you'd like to receive the monthly The SPSRF Newsletter through email, sign up here:
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