PUT YOUR BEARD IN MY MOUTH
Sweet Seals For You, Always
pixel skylines
Lint Roller? I Barely Know Her
trying on a metaphor
PR's Tumblrdome
$LAYYYTER
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⁂
Claire Keane
occasionally subtle
#extradirty
Mike Driver
Keni
he wasn't even looking at me and he found me
Aqua Utopia｜海の底で記憶を紡ぐ
★
I'd rather be in outer space 🛸
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DEAR READER
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@sindhu1901
EverythingALS: Inspiring Stories of ALS Warriors
Experience the heartfelt stories of individuals living with ALS, showcasing their strength, courage, and unwavering spirit. Click here for an inspiring journey into the lives of these remarkable individuals.
Stories of ALS Warriors
ALS Event Replays
Discover the video archives showcasing past ALS events, ensuring you catch up on insightful discussions and updates across a range of relevant topics.
Find the videos on EverthingALS page and subscribe to their Youtube channel.
About EverythingALS
EverythingALS is a patient-centric non-profit organization operating under the Peter Cohen Foundation. Comprising a diverse team including patient advocates, healthcare professionals, AI engineers, and ALS patients, they aim to leverage technology as a vital catalyst for innovating solutions to combat Amyotrophic Lateral Sclerosis (ALS). Their mission involves bridging the gap between patients, research, and technology. With a focus on open-data platforms, EverythingALS facilitates direct engagement among patients, caregivers, researchers, and drug companies, fostering collaboration across the ALS community to advance efforts from care to cure.
Learn more- https://www.everythingals.org/aboutus
Publications by EverythingALS
Check out the recent publications on
-ALS Community Pressing Issues: Lessons from a Survey
-Multimodal dialog based speech and facial biomarkers capture differential disease progression rates for ALS remote patient monitoring
-Lessons learned from a large-scale audio-visual remote data collection for Amyotrophic Lateral Sclerosis research.
and many more. Know them in detail — https://www.everythingals.org/publications
The ALS Gene Carrier Study by EverythingALS
The ALS Gene Carrier Study focuses on individuals who carry the gene for Amyotrophic Lateral Sclerosis (ALS) but are currently asymptomatic. The study aims to enhance early detection and monitoring of motor and speech changes through advanced computational technology. Participants will contribute to refining assessments of asymptomatic ALS gene carriers using physiological signals and objective measurements. The study employs a remote, multimodal monitoring approach, measuring gait and balance, speech, and upper limb function through motor function sensors. By joining, participants play a crucial role in advancing understanding of early ALS manifestations from the comfort of homes.
If you would like to participate in this study in the near future, please fill out the interest form below.
EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support effort
Speech Project Research by EverythingALS
Advancing the Diagnosis and Prognosis of ALS from Speech
They are looking for Individuals Diagnosed or Probable with Amyotrophic Lateral Sclerosis (ALS) and Healthy Participants to help give 5 speech recordings with total 75 minutes over 5 months
Their IRB approved study is motivated by the need for early detection and improved prognostic accuracy of ALS using advanced computational technology and speech data (audio, video). By participating in this study, you will contribute to a growing large ALS dataset and further advance current knowledge relating to the decline in speech due to ALS while also improving the performance of this technology.
The approach will be to perform analysis of online audio/video recordings: The study activity involves the use of Modality.ai Inc.’s web-based software that collects speech audio and video data and then uses AI and machine learning algorithms to analyze facial and speech metrics. Data collection can be conducted anywhere you feel comfortable (e.g., your home). One session per month over 5 months, and each session will last approximately fifteen minutes.
Continue reading — https://www.everythingals.org/speechproject
Fireside Chats by EverythingALS
Venturing into ALS support amplifies the depth of support available within EverythingALS Fireside Chats. With their specialized advocates, each dedicated to specific aspects of the ALS journey, participants find tailored communities that resonate with their unique needs. Whether one is navigating the complexities of caregiving, seeking advice on assistive technologies, or simply connecting with those who understand the daily challenges, these groups serve as lifelines within the ALS Community
Here is the link to join ALS community-
Fireside Chats by EverythingALS
Fireside Chats by EverythingALS
EverythingALS, a non-profit organization dedicated to patients, operates under the Peter Cohen Foundation (PCF), a 501(3)c entity. Their goal is to assist ALS patients and contribute to finding a cure, establishing a platform for direct interaction among patients, caregivers, advocates, and researchers.
Join EverythingALS for an opportunity to be with caring people who wish to chat, listen, share, and learn at Fireside chat virtual event on 20 Dec.
Click here to Register now
Developing a Robust Diagnostic Test for ALS by EverythingsALS
Join EverythingALS’s groundbreaking talk series event on “Developing a Robust Diagnostic Test for ALS” on Dec 13, 2023, from 7:00 PM to 7:05 PM.
Where: Virtual Event via Zoom
Get ready to delve into the world of cutting-edge research and innovation as experts discuss the development of a diagnostic test for ALS. Your participation is crucial in advancing our understanding of this challenging condition.
Click the link below to register now!
The purpose of the studying ALS by EverythingALS
The purpose of the study is to conduct a comprehensive examination in a remote and observational manner, without any direct intervention or control, to explore potential digital measures for monitoring clinical function and disease progression in individuals with Amyotrophic Lateral Sclerosis (ALS). ALS is a progressive neurodegenerative disorder affecting the motor neurons, leading to muscle weakness and atrophy.
In this study, the term “observational” implies that the researchers will observe and collect data without actively intervening or manipulating any variables. The study is fully remote, meaning that participants can contribute data from their homes, likely utilizing digital platforms and devices.
The study aims to explore the feasibility and relevance of remote digital measures for monitoring the clinical status and progression of ALS. If successful, these measures could potentially serve as valuable tools for assessing and managing the disease, offering a more convenient and continuous monitoring approach for individuals with ALS.
Continue reading — https://www.everythingals.org/radstudy
Major Health Insurers Delay or Deny Home Ventilation for People with ALS.
Join EverythingALS for an upcoming event shedding light on the significant challenges faced by individuals with ALS, particularly the concerning delays or denials by major health insurers in providing home ventilation. Your participation can make a difference. Register now to be part of the conversation and contribute to the collective effort towards finding solutions and improving the lives of those affected by ALS.
Event Details & Registration by EverythingALS
EverythingALS is driven by the belief that technology can revolutionize ALS research. Their diverse team, including patient advocates, students, healthcare professionals, entrepreneurs, and AI engineers, is united in bridging gaps between patients, research, and technology. With a mission to provide vital support and information, they aim to make a positive impact on the lives of those affected by ALS, working towards finding a cure.
Register to join the below event and know more
People Living With ALS Are Being Denied NIV by Some Medicare Advantage Plans — https://www.everythingals.org/event-details/people-living-with-als-are-being-denied-niv-by-some-medicare-advantage-plans/form
ALS Revolution: EverythingALS Explores Comprehensive Understanding
Seeking individuals displaying initial symptoms and diagnosed with Possible, Probable, or Definite ALS for an innovative research initiative. Their study is endorsed by an Institutional Review Board (IRB), is driven by the quest for early detection and enhanced prognostic precision in ALS, leveraging cutting-edge computational technology. Participation in this groundbreaking research not only adds to a robust ALS dataset but also propels advancements in the evaluation and treatment of ALS by harnessing physiological signals and precise objective measurements.
Continue to enroll — https://www.everythingals.org/radstudy
The ALS Gene Carrier Study | EverythingALS
The ALS Gene Carrier Study conducted by EverythingALS is actively seeking individuals who are gene carriers of ALS and currently asymptomatic. This study is driven by the imperative to enhance the monitoring and early detection of motor and speech changes through cutting-edge computational technology. Those who choose to participate in this study will play a pivotal role in advancing the current assessment methods for individuals with the asymptomatic ALS gene by contributing physiological signals and objective measurements.
The objective of this study is to detect early motor and speech changes in ALS through a comprehensive multimodal monitoring approach. This involves the measurement of gait and balance, speech patterns, and upper limb function leveraging state-of-the-art motor function sensors. Notably, the study is designed to be fully remote, allowing participants to engage in the comfort of their homes while making a significant contribution to the ongoing efforts in understanding and combating ALS.
Continue reading - https://www.everythingals.org/asymptomatic-study
EverythingALS Launches “Stories and Innovation in ALS” Podcast
For an inside look at how ALS impacts patients and their caregivers as well as the innovations that researchers and clinicians are coming up with to find biomarkers, treatments, and cures for this life-threatening disease, start listening to the EverythingALS podcast, “Stories and Innovation in ALS.”
EverythingALS (EALS) was founded in 2020 to help discover biomarkers – which are nonexistent -- and document the progression of ALS by launching the world’s largest speech study with more than 600 participants. The California nonprofit teamed up with Modality.ai, which has developed AI technology to remotely spot biomarkers and assess progression of ALS through speech and facial gestures using a virtual agent, or avatar.
Continue reading - https://www.everythingals.org/post/everythingals-launches-stories-and-innovation-in-als-podcast
Publications by EverythingALS
Check out the recent publications on -Real-World Treatment Preferences Among People Living with ALS: A Discrete Choice Experiment -Remote Inference of Cognitive Scores in ALS Patients Using a Picture Description -Screening for amyotrophic lateral sclerosis through interactions with an internet search engine and many more. Know them in detail — https://www.everythingals.org/publications
Future Events by EverythingALS
EverythingALS believe that technology holds the potential to play a pivotal role in driving innovation to ultimately find a cure for ALS. Their mission revolves around bridging the existing gaps between patients, research, and technology. The team is a diverse blend of individuals, including patient advocates, students, nurses, physicians, entrepreneurs, artificial intelligence engineers, biologists, and even ALS patients themselves. Adding to this mix is the invaluable spiritual guidance of someone who has personally experienced reversing the effects of ALS. Together, their collective efforts are dedicated to providing crucial information and support to all those affected by ALS, with the ultimate goal of making a positive impact on the lives of individuals grappling with this devastating disease.
Register to join the below event and know more
“The Art of Showing Up” 26 Years of Tending to and Caring for PALS and CALS. Would You Like to Know What I Know ?