CurePSP

Eugenia Aguirre found herself at a crossroads when she was diagnosed with corticobasal degeneration (CBD). Overwhelmed by the rapid lifestyle changes that accompanied her diagnosis, she chose to make the most of every day and fight as hard as she could. Living alone meant managing the disease was a lonely and daunting journey, until she connected with the Flying Solo Support Group, where she met a group of similarly independent individuals. CurePSP spoke to Eugenia and the two support group leaders, Adriana Gonzalez and Diane Breslow, on how the members of Flying Solo are empowering each other to live their own way. Listen to the full episode here: https://lnkd.in/dCCZF4TF #CurePSP #BecauseHopeMatters #Podcast #TheCollectiveMind #Care #PSP #MSA #CBD

I just completed my 2nd NYC Marathon yesterday evening in beautiful New York. While I didn’t set any world records my run was for me and to keep moving forward. Like a lot of people 2024 has been short on the positives and wins. My dad passed in May which is what got me into running last year as a charity runner for CurePSP to raise funds and awareness. When my dad passed this year this marathon took on an importance of running and healing. I called him last year during the marathon and while he was pretty much nonverbal the last 6 months I’ll never forget our call; he damn near fell out of the chair reaching for me on FaceTime when chatting. This one was for him. I don’t post much on LinkedIn but I wanted to share this to be real, authentic and to just state get out and to LIVE- in whatever form you choose. #curepsp #reflections #healing

It’s great to see the PSP Clinical Trial Platform described and advertised at CTAD Clinical Trials on Alzheimer's Disease in parallel to the Alzheimer’s Disease Platform. Thanks University of California, San Francisco UC San Diego Harvard Medical School and Massachusetts General Hospital Alzheimer's Therapeutic Research Institute (ATRI) for your leadership and collaboration! CurePSP is thrilled to be involved and help recruit and retain participants to this new opportunity to advance therapies and biomarker discovery.

This weekend on Sunday, CurePSP is honored to be a charity partner in the 2024 TCS New York City Marathon! #TeamCurePSP includes six dedicated runners pushing their limits to raise awareness and crucial funds for those affected by PSP, CBD and MSA. As they race through the streets of NYC, let’s rally behind them from wherever we are and show our support! 📍 If you're local to NYC, join us on the sidelines of the cheer station at 1st Ave & 100th St (west side of the intersection) to cheer on #TeamCurePSP! Let’s make some noise and support these incredible athletes! Consider making a donation—every contribution brings us closer to improved treatments and essential support for our community. Together, we can make a difference! Support #TeamCurePSP: https://lnkd.in/eBdHH6Vf #CurePSP #BecauseHopeMatters #AtypicalParkinsonism #NYCMarathon #RunNewYork #NewYork #CharityRunner

The growth of the CurePSP Centers of Care took another important step forward when CurePSP hosted the first in-person Centers of Care Meeting on September 27 in Philadelphia. Since its inception in 2017, the program has grown from eight inaugural centers to a well-orchestrated network of thirty-six medical centers. These collaborations are the exact sort of initiatives that Jessica Shurer, CurePSP’s director of clinical affairs and advocacy, envisioned to advance care resources for community members. “This is what I always knew this network needed to be and could be, but even with all of our accomplishments so far, we’re just getting started with what these centers can do together,” Shurer said. Read the full story covering the event here: https://lnkd.in/e6DCBkUF #CurePSP #BecauseHopeMatters #CentersOfCare #CurePSPCoC #NonProfit #PSP #CBD #MSA

As Day 2 of #Neuro2024 concludes, we extend our gratitude to all our speakers and attendees for their invaluable contributions. The gathering and sharing of research is crucial for advancing our understanding of progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD). Thank you for being an integral part of this collaborative journey. We anticipate the continuation of these important discussions. Check out some highlights from today’s sessions! #CurePSP #UHN #PSP #CBD #Neuro #Neuroscience #Research

Here’s a glimpse of some of our distinguished speakers of Day 2 at #Neuro2024! 🌟 Their knowledge and insights have enriched our discussions and furthered our understanding of PSP and CBD. Today's presentations included topics such as a trailblazing conceptual framework to understand the pathogenesis of PSP, wearable remote monitoring technology for tracking PSP symptoms and beyond tau: insights from clinical, neuropathological and genetic studies. Thank you to all our speakers for their valuable contributions! Speakers: Gabor G. Kovacs, University of Toronto and University Health Network, Toronto, Canada  Ashkan Vaziri, BioSensics, Newton, Massachusetts, USA  John Crary, Friedman Brain Institute, Ronald M. Loeb Center for Alzheimer’s Disease, Icahn School of Medicine at Mount Sinai, New York, New York, USA #CurePSP #UHN #Research #Neuro #Neuroscience

Welcome to Day 2 of Neuro2024: The PSP and CBD International Research Symposium! After a successful first day of engaging discussions and groundbreaking presentations, we’re excited to dive even deeper today. Hosted by CurePSP and the Rossy PSP Centre at the University Health Network at the Krembil Brain Institute, part of the University of Toronto, this symposium continues to bring the brightest minds in neuroscience together at the Omni King Edward Hotel in Toronto, Ontario. Day 2 will feature advanced insights, in-depth research, and collaborative sessions that aim to drive forward our understanding of PSP and CBD. It’s another opportunity to connect, share and inspire innovation in the fight against these diseases. Join the conversation by using the hashtag #Neuro2024 on X! #CurePSP #UHN #PSP #CBD #Neuroscience #Research

Here are just a few of our esteemed speakers from Day 1 of #Neuro2024! 🔬 The invaluable insights and expertise of our speakers have significantly advanced our understanding of progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD). Today's presentations will address critical subjects, including updates on the DescribePSP and ProPSP initiatives, the CurePSP Genetics Program, and an exploration of endemic Parkinsonism, focusing on clusters and associated risk factors. We extend our gratitude to all speakers for their impactful contributions. Speakers: Günter Höglinger, LMU Klinikum München, Munich, Germany, Munich, Germany  Anne-Marie Wills, Massachusetts General Hospital and Harvard Medical School, Cambridge, Massachusetts, USA  Petr Kanovsky, Palacký University Olomouc, Olomouc, Czech Republic #CurePSP #UHN #Research #Neuro #Neuroscience

Thank you to all our sponsors of Neuro2024: The PSP and CBD International Research Symposium! Your support is invaluable in advancing research and fostering collaboration in the field of PSP and CBD. Thank you for your commitment and partnership! GemVax & KAEL The Rainwater Charitable Foundation Life Molecular Imaging The Association for Frontotemporal Degeneration (AFTD) Ferrer #CurePSP #UHN #Neuro2024 #Research #Neuro #Neuroscience