EverythingALS

🌟 Exciting News! 🌟 We are proud to announce that our organization is a founding member of The Implantable Brain-Computer Interface Collaborative Community (iBCI-CC)! As a charter member, we are committed to living our "care to cure" ethos, dedicated to advancing the frontier of brain-computer interface (BCI) technology. Joining iBCI-CC aligns perfectly with our vision of integrating BCI into our research platform and studies, ensuring patient inclusivity throughout their journey. Our participation underscores our commitment to collaboration, innovation, and leadership in this cutting-edge field. Together, we will drive breakthroughs that enhance patient care and transform lives. Here's to a future where technology and humanity come together for the betterment of all! Want to learn more about this exciting area of research? We have two great options for you: First, you can check out our recent Expert Series talk about Brain Computer Interface (BCI) Trials in ALS with Dr. Leigh R. Hochberg: https://lnkd.in/dHiwAxM9 Then, take an additional deep dive into this topic with another recent Expert Series talk titled "Implantable BCI Technology - The Road to Access" featuring the following experts: - Craig Mermel, President and Chief Product Officer - Precision Neuroscience - Spencer Kellis, Sr. Team Lead Data Sc Clinical Research - BlackRock - Andreas Forsland, Founder, CEO, Chief Prod Officer - Cognixion - Chris Ullrich , Chief Technology Officer - Cognixion - Dr. Shelena Lalji, CEO & Founder - ALS Heros & Shell Wellness Center See that talk here: https://lnkd.in/eWhNr8t6 #ALS #CareToCure #BCI #Innovation #PatientInclusivity #CollaborativeLeadership #HealthcareRevolution #iBCICC

Our founder and CEO, Indu Navar, and our Executive Director, Christian Rubio, had an inspiring meeting recently with Brian Radecki, Founder and CEO of Rapa Therapeutics, and Dr. Daniel Fowler, the Chief Medical Officer at Rapa Therapeutics! The reason for the meeting? We are thrilled to announce that our organization will be collaborating on research with Rapa Therapeutics. 🎉 Rapa Therapeutics is leading the charge in developing revolutionary treatments for some of the most challenging diseases, including cancer, neurodegenerative disorders, autoimmune, and inflammatory conditions. With Brian and Dr. Fowler at the helm, their vision for a better future is truly inspiring. One of Rapa's most promising projects is an innovative cell therapy aimed at: 1) Reducing inflammation: This therapy targets the inflammatory aspects of ALS, a key contributor to disease progression. 2) Slowing Disease Progression: By utilizing the patient's own reprogrammed cells, Rapa's therapy aims to empower the body to combat ALS more effectively. This collaboration between EverythingALS and Rapa Therapeutics will strengthen our combined efforts in the fight against ALS. We're excited to witness the continued progress of this potentially curative cell therapy and its potential to transform the lives of ALS patients. Want to learn more about our collaboration? Brian Radecki and Dr. Daniel Fowler recently spoke as part of our Expert Talk Series. Watch a replay of it here: https://lnkd.in/gqP2wwuH #HealthcareInnovation #CellTherapy #ALS #RapaTherapeutics #Immunotherapy #CuttingEdgeScience #Biotech

It was my pleasure to bring my perspective as an ALS patient to the FDA / FNIH Digital Measures Workshop in Bethesda, MD earlier this week. Whereas our everyday technology devices (e.g., smartphones/watches) measure our movement, heart rate and more, the medical field continues to resort to more traditional methods (e.g., scales/surveys) in clinical trials. Digital Health Technology (DHTs) - which in ALS can objectively measure progression of mobility, speech, strength and breathing loss at home using special devices paired with a smart phone - stands to make clinical trials and care more effective, efficient and inclusive. So the Workshop focused on: How can we accelerate progress in this space? Here are my highlights: 1.     (Left of picture) Helping the enigmatic Indu Navar showcase the incredible progress that EverythingALS is making in pioneering DHTs in ALS 2.     Having the honor (thanks to Dana E. Connors from FNIH) of opening the Workshop by expressing the need to move with urgency, agility and partnership across disease fields 3.     Learning about the great efforts in DHTs taking place in Parkinson’s, Duchenne, Sleep Apnea, Opioid Addiction, etc. (with a fabulous keynote from Jennifer Goldsack from DiMe) 4.     Connecting with so many great people from Pharma, Nonprofit, Government and Technology - including the amazing Diane Stephenson from C-Path 5.     (Right of picture) Receiving a lovely note from a Pharma attendee supporting the need for patients to have a real seat at the table at meetings like this Thank you again to Indu Navar, Christian Rubio and the team at EverythingALS for pulling me into such an exciting event; and to Walter Koroshetz (NINDS), Dana E. Connors (FNIH) and Leonard Sacks (FDA) for creating a patient centric workshop where I felt welcome, valued and free to speak my mind.

Today at 4pm PST / 7pm EST Precision Neuroscience’s President and Chief Product Officer, Craig Mermel, will join other brain–computer interface industry leaders for an EverythingALS Expert Talk titled, "Implantable BCI Technology - The Road to Access." Register at the link below for what promises to be a fascinating discussion about the present and future of this fast-evolving technology, and what it could mean for people with ALS: https://lnkd.in/gCsi4irb #EndALS #EverythingALS #ALS #BrainComputerInterface #ALSExpertTalks Spencer Kellis Andreas Forsland Chris Ullrich Dr. Shelena Lalji

Join us today at 7PM ET for an expert panel discussion with EverythingALS, featuring our own Spencer Kellis. Register here: https://lnkd.in/gAhzQ3yG

Indu Navar, CEO and founder of EverythingALS, pioneers a data-driven and collaborative approach to accelerate #ALS research. Indu is co-hosting "Neurotech Now" joined by Leigh H., MD, PhD, Director of the Center of Neurotechnology and Neurorecovery at Massachusetts General Hospital, Dr. Shelena Lalji, MD, F.A.C.O.G. of ALS Heroes and Team Gleason Foundation at the ALS ONE Research Symposium in November. The aim is to highlight the transformative power of neurotechnology in #ALS.     By bringing together researchers, providers and individuals with #ALS globally, EverythingALS promotes open data sharing to spur innovation and advance towards treatments and cures. Indu's commitment to collaboration underscores the belief that the #ALSMND community is #BetterTogether. #ALSMNDWithoutBorders #EndALS

Join us on our next #ALS #ExpertTalk series: Implantable BCI Technology - The Road to Access by Michael Mager and Dr. Shelena Lalji 📅 June 26, 2024 ⏲ 4PM PT, 7PM PT REGISTER: everythingals.org/events

Watch our last #ExpertTalk: https://lnkd.in/gWHh5vGG 🔔 To never miss an update on our #ALS Expert Talk series, subscribe to @EverythingALS on YouTube.

EverythingALS "#Pridopidine for treatment of #ALS" webinar with Prilenia's Michael Hayden and Henk Schuring, June 12th, 2024 | 4PM PT, 7PM ET - to register: https://lnkd.in/d_u9NnUD

Two years ago my mentor and dear friend Bill asked me to join a cause and rally around finding a cure for ALS. Fast forward to today, and I’m proud to be supporting not only Bill Nuti but also Indu Navar and her amazing and passionate team at EverythingALS. If you’ve ever known or had someone close to you suffering from ALS or another neurodegenerative, you know it’s been too long to not have found a cure. But now is the time and Vision 2030 is the way. Please take a moment to watch this and learn about how Bill and Indu are using AI for good.