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EVERYTHING ALS Student Ambassadors James Sagaser James Sagaser is a volunteer who joined EverythingALS in March 2020, seizing the opportunity to contribute and expand his knowledge of ALS when everything transitioned to an online platform during the COVID-19 pandemic. Eager to make a difference in the medical field, James is set to commence his journey as a medical student at CHSU in the upcoming fall of 2023. Fellow Bella Yarahmadi Bella Yarahmadi is a graduating senior at USC, majoring in Human Biology. As her family has been personally affected by ALS, she is grateful to have found this community. In being part of a determined, compassionate, and innovative team, she is hoping to apply her experiences towards a future in medicine and is fulfilled in being able to establish real patient connections. Fellow Lily Xia Lily is a senior at the University of Southern California studying human biology and aims for a future career as a physician. She currently works as a medical assistant at a private practice and as a cell biology research assistant at the USC School of Gerontology. She joined EverythingALS in 2021 to learn more about ALS by building relationships with those affected by the disease, and hopes to contribute to improving how ALS is diagnosed and treated. Student Ambassador Alex McKnight Alexandra McKnight is a senior at Wake Forest University, majoring in Health and Exercise Science with a minor in Chemistry. On campus, Alexandra is the Alumni Director for the campus-wide Hit The Bricks philanthropic event that fundraises for the Brian Piccolo Cancer Research Fund. She also serves as a member and captain of Wake Forest’s Dance Team, competing yearly at Nationals and cheering on her fellow sports teams. Student Ambassador Olivia Manogaran Hi I’m Olivia. I’m from Toronto, Canada and I’m currently studying biology. I joined ALS because I am able to foster connections with patients and raise awareness about ALS. Student Ambassador Casey Duan Casey graduated from the University of Southern California and hopes to pursue a career in medicine. She joined EverythingALS during her first year at USC and found EALS to be one of her most meaningful involvements these last few years. She is excited to engage with you all and to continue growing our EALS community! Fellow Bryan Truong Bryan Truong recently graduated with a BA in Psychology with a minor in Spanish from the University of Texas at Austin. He has been with EverythingALS for about a year now and is honored to obtain leadership and professional experience while engaged in this environment. He is excited to begin his journey as an EverythingALS Fellow! Fello w Judy Chae My name is Judy Chae, and I am a senior at USC majoring in Human Biology. I was born in South Korea, but grew up in Irvine, CA for the most part. I joined EALS because I wanted to partake in research and ongoing studies that are able to make real-time impact in those struggling with ALS. To be a part of long-term research with tangible changes has always been my goal, and EALS is an amazing opportunity for it! Student Ambassador Karina Parikh My name is Karina Parikh and I am a rising junior at the University of Southern California. I am pursuing a B.S. in Human Biology, while also working towards a M.S. in Global Medicine. I am currently part of a few different pre-health organizations on campus and I participate in research at Children’s Hospital Los Angeles. Student Ambassador

Dont' miss an event, watch the past ALS Talk series from worls renowned ALS Experts Subscribe to Youtube channel Videos All Categories Play Video Play Video 01:06:37 Palliative Care for ALS: What is it? How can it help? How to access it? Welcome to another compelling episode of #ExpertTalk by EverythingALS! In this session, we’re joined by Dr. Kara Bischoff, Associate Division Chief for Outpatient Palliative Care and the Medical and Director of the Outpatient Palliative Care Service at University of California, San Francisco (UCSF). Dr Bischoff discussed: • What palliative care truly is — and how it supports people living with ALS and their families • Common myths and misconceptions, including why palliative care is not the same as hospice • How a palliative care team works alongside an ALS care team to improve quality of life, communication, and decision-making 📲 Download the EverythingALS App: - Google Playstore: http://bit.ly/4nXqIYy - App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► Twitter: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #ALSResearch #EverythingALS #ALSCommunity #palliativecare #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts 🔔 If you're passionate about advancing ALS care and research — like, subscribe, and turn on notifications. Share this episode to raise awareness and support for the ALS community. Play Video Play Video 01:03:26 Healey ALS MyMatch: Overview & Update Welcome to another compelling episode of #ExpertTalk by EverythingALS! In this session, we’re joined by Dr. Suma Babu, Co-Director, Neurological Research Institute, Massachusetts General Brigham and Associate Professor of Neurology, Harvard Medical School Dr Babu discussed: • Big picture: This talk introduced Healey ALS MyMatch, a new approach to running faster, smarter early-phase ALS clinical trials by focusing on biology, biomarkers, and patient-centered design. • Why it matters: MyMatch aims to reduce trial delays, improve access, and increase the chances of identifying promising treatments by better matching people living with ALS to the right studies. • What’s happening now: The program has already launched its first trial and is building a growing pipeline of additional therapies, with more studies expected in the near future. • What participants should know: MyMatch is designed for people with ALS who meet specific eligibility criteria, while expanded access programs and other pathways remain important options for those who do not qualify. 📲 Download the EverythingALS App: - Google Playstore: http://bit.ly/4nXqIYy - App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► Twitter: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #ALSResearch #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts #HealeyMyMatch 🔔 If you're passionate about advancing ALS care and research — like, subscribe, and turn on notifications. Share this episode to raise awareness and support for the ALS community. Play Video Play Video 01:17:41 Updates on ALS Clinical Trials from Regeneron and VectorY Welcome to another compelling episode of #ExpertTalk by EverythingALS! In this session, we’re joined by Dr. Oren Levy, Medical Director, Early Clinical Development, Regeneron Pharmaceuticals and Dr. Olga Uspenskaya-Cadoz, Chief Medical Officer, VectorY Therapeutics. Drs Levy and Uspenskaya-Cadoz discussed: • Progress on a new siRNA therapy for SOD1-ALS, focused on slowing disease progression through precision targeting (Dr. Levy). • Vectory Therapeutics introduced VTX002, an innovative gene therapy aimed at TDP43, advancing global trials that could redefine ALS treatment. • Both speakers emphasized collaboration, biomarkers, and patient-driven innovation as key to accelerating breakthroughs in ALS research. 📲 Download the EverythingALS App: - Google Playstore: http://bit.ly/4nXqIYy - App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► Twitter: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #ALSResearch #ALSBiobanking #ALSClinicalTrials #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts 🔔 If you're passionate about advancing ALS care and research — like, subscribe, and turn on notifications. Share this episode to raise awareness and support for the ALS community. Play Video Play Video 01:30:15 Signals from the Outer Limits - What I've Learned from Slow Progressors and ALS Reversals Welcome to another compelling episode of #ExpertTalk by EverythingALS! In this session, we’re joined by Dr. Richard Bedlack, Stewart, Hughes, and Wendt Distinguished Professor, Professor of Neurology at Duke University, Associate of the Duke Initiative for Science & Society, and Faculty Network Member of the Duke Institute for Brain Sciences. Dr. Bedlack dives into: • What ALS reversals teach us about potential recovery and resilience. • How studying these rare cases can reveal new insights for future treatments. • His unique, optimistic approach to research that challenges conventional thinking about ALS. 📲 Download the EverythingALS App: - Google Playstore: http://bit.ly/4nXqIYy - App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► Twitter: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #ALSResearch #ALSBiobanking #ALSClinicalTrials #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts 🔔 If you're passionate about advancing ALS care and research — like, subscribe, and turn on notifications. Share this episode to raise awareness and support for the ALS community. Play Video Play Video 01:02:01 ALS BioBanking in the 21st Century Welcome to another compelling episode of #ExpertTalk by EverythingALS! In this session, we’re joined by Dr. Brent Harris, Professor in the Departments of Neurology and Pathology at Georgetown University. He shares critical insights into the future of ALS biobanking — how cutting-edge tissue collection and analysis are driving breakthroughs in ALS research and patient care. Dr. Harris dives into: How biobanking advances our understanding of ALS The power of brain and tissue donation in accelerating discovery Innovative research shaping next-generation ALS therapiesI 📲 Download the EverythingALS App: - Google Playstore: http://bit.ly/4nXqIYy - App Store: https://bit.ly/42tPBmh Follow EverythingALS: ► Website: https://www.everythingals.org ► Twitter: https://x.com/everything_als ► LinkedIn: https://www.linkedin.com/everythingals ► Facebook: https://www.facebook.com/EverythingALS ► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals #ExpertTalk #ALSResearch #ALSBiobanking #ALSClinicalTrials #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts 🔔 If you're passionate about advancing ALS care and research — like, subscribe, and turn on notifications. Share this episode to raise awareness and support for the ALS community. Play Video Play Video 01:40:32 Genetics and ALS: What New Discoveries Mean for You and Your Family with Jennifer Roggenbuck MS, CGC For this Expert Talk, we were honored to host Jennifer Roggenbuck, MS, CGC, a licensed genetic counselor and associate professor at The Ohio State University. Jennifer broke down the genetics of ALS, including: * Recent discoveries shaping our understanding of the disease * The role and implications of genetic testing * Key differences between familial and sporadic ALS She also explored the progress being made in gene-targeted therapies and highlighted the vital role genetic counselors play in helping families navigate testing and results. This session also included personal stories from community members living with ALS, as well as discussions about ongoing research efforts and global initiatives advancing therapy development. 📢 If you find this video helpful, please like, share, and subscribe to support ALS awareness and research. Related links: Speech Study: https://www.everythingals.org/speechproject The ALS Gene Carrier Study: https://www.everythingals.org/asymptomatic-study About EverythingALS: EverythingALS is a patient-focused nonprofit organization dedicated to accelerating the discovery of treatments and a cure for ALS through collaboration, innovation, and empowering patients and researchers. Stay Connected: ► Website: https://www.everythingals.org ► LinkedIn: /everythingals ► Facebook: /everythingals ► Subscribe for more Expert Talks: /everythingals 🔔 Subscribe to EverythingALS for expert discussions, research updates, and community support for ALS. #ALS #Nutrition #EverythingALS #ALSResearch #Neuroscience #PatientCare Load More

Pickle Ball for All in Seattle on 16-17th Sept 2023 PickleBall for all in Seattle! EverythingALS and Seattle Metro PickleBall in conjunction with the City of Seattle and Seattle Parks Foundation will be hosting a "Pick leBall for All" street festival downtown September 16-17, 2023 Register here Join for a fun day! See more information below: There will be 10 pickleball courts Live music Beer garden Food trucks We are thankful for generous offer for the People with ALS and Families to participate with reserved courts. Astria PickleBall is sponsoring the paddles. If you and your family are interested in attending --- as it is a short notice --- Please register and/or email info@everythingals.org ASAP. We will put you in the VIP list. September 16-17, 2023 Downtown Seattle Intersection of 5th Avenue and Vine street, (under the monorail) between Denny and Taylor Register here

Harvard medical, MGH, Temple University, IBM, MIT EVERYTHING ALS Scientific Advisory Board James Berry, MD, MPH, is a Winthrop Family Scholar in ALS Sciences at Massachusetts General Hospital (MGH); Director, MGH Neurological Clinical Research Institute; and Chief, Division of ALS and Motor Neuron Diseases. In these roles, he provides care for people with ALS and works as an ALS researcher designing, overseeing and implementing trials focused on the identification of markers of ALS in digital, blood and spinal fluid. He also collaborates broadly with researchers around the globe on these biomarker efforts. As Chair of the DOD ALS Research Programmatic Panel , he led recent efforts to develop and refine funding mechanisms to help novel treatments move though the drug development pipeline, prioritize biomarker development, and encourage open data and resource sharing. He also Directs an ALS Postmortem Tissue Research Core in collaboration with the CDC National ALS Registry which integrates clinical, pathological, and genomic data with autopsy tissue samples and slides – all made broadly available to researchers around the world. Ernest Fraenkel, PhD, is a Professor of Biological Engineering at MIT, where he oversees a laboratory developing computational and experimental approaches to search for new therapeutic strategies for diseases, especially diseases of the central nervous system. Their work uses machine learning, AI and bioinformatics to integrate molecular, clinical and behavioral data to understand how diseases develop and to suggest new directions for drug development.

EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. Currently not enrolling ALS Radcliff Study : Multi-disciplinary focus

Digital Biomarkers and Endpoints Summit August 25 and 26, 2024 | Boston, MA “Accelerating the Path from Validated Endpoints to Biomarkers and Beyond” Pre-Event Networking & Listening Session with "Hop" Sunday, August 25th 4:00pm, Gillette Stadium, Foxborough, MA Join us for a special evening at the Zac Brown Band/ Kenny Chesney Concert is holding the opening reception with John "Hop" Hopkins and his family. Hop is the lead guitarist for the world-famous Zac Brown Band, and his family-run charity Hop on a Cure goes everywhere the band goes to raise awareness and funds for ALS research and support. In an intimate setting prior to the band performing, we'll be talking with Hop and his family about their life with ALS and his fight to keep writing and performing music with the band; and we'll learn more about his charity Hop on a Cure. Digital Biomarkers Summit Monday, August 26th 7:30am: J&J Offices, Cambridge MA Our friends at J&J have generously offered to host us this year in the same venue as last year, 320 Bent St, Cambridge, MA . We will be on the first floor, with the reception desk inside the main foyer, joined by a special surprise guest! We'll end the day with a "thank you" reception in the same building to ensure we have time to reflect and spend some extra time together before we head out. Hosts & Speakers Indu Navar, MSCS CEO and Founder EverythingALS Lyle Ostrow, MD, PhD ALS Clinician-Scientist Temple University Silviya Bastola Clinical Project Research Manager EverythingALS Janie Gobeli pALS EverythingALS Melanie Leitner Scientific Advisory Board Member Carney Institute for Brain Science at Brown University Brendan O'Leary Digital Health technology, regulation, and policy consultant Henk Schuring Chief Regulatory and Commercialization officer Prilenia Therapeutics James Berry, MD, MPH Chief of the Division of ALS and MND, Neurology MGH, HMS Stephanie Henze Research & Design Strategy EverythingALS Mindy Uhrlaub Author Bryan Hansen Director of Data Science and Digital Health Johnson & Johnson Innovative Medicine Eduardo Locatelli Physician Executive Director Neurologist & Researcher NSU Neuroscience Institute Julian Pellar Lead Data Scientist EverythingALS Joel Schwartz Scientific Director - Digital Biomarkers Bristol Myers Squibb Merit Cudkowicz Neurologist & Clinical Researcher MGH Christian Rubio Digital Health Strategy EverythingALS Terry Heiman-Patterson Professor of Neurology Lewis Katz School of Medicine at Temple University John Hudacek pALS McFinn Lovere Pathfinder EverythingALS Anusha Rao Student Ambassador EverythingALS David Shulman Head of Enterprise Investment at Wells Fargo Person Living with ALS Ernest Fraenkel, PhD Professor of Biological Engineering MIT Brooke Eby Partnerships @ Salesforce | ALS fighter Collin Hovinga VP Rare and Orphan Diseases,(CP-RND), (RDCA-DAP) C-PATH Steve Kowalski pALS Natalia Luchkina Research Lead EverythingALS Esteban Roitberg Senior Data Scientist EverythingALS Gayle Wittenberg VP, Neuroscience Data Science and Digital Health Janssen R&D Agenda Attendees BIOS

Austen Speech Study EverythingALS is building an active, growing citizen research participants to draw from the community of over 7,000 People with ALS and Caregivers who collaborate directly with leading minds at eminent research institutions, jointly executing IRB-approved studies with EverythingALS for digital biomarker research to detect subtypes of ALS progression, early diagnosis and for remote patient monitoring. Aims: Collect Data Create Objective Measures Creation of a robust, longitudinal data collection - DEI achieved Fostering engagement Data & Research Output: Cohort characteristics 1200 HOURS OF DATA 7000 SESSIONS 850 PARTICIPANTS Citizen Driven Rapid Recruitment EverythingALS implemented a grassroots effort to recruit participants from our patient support community. With a reach that expands to 7,000 email subscribers, over 300,000 YouTube viewers, and 5,000 total attendees to our weekly Fireside Chats and ALS Expert Talk Series presentations, our organic method of recruitment is built on the solid reputation EverythingALS.org has secured by gaining patient trust as a leader in the research field. The membership comprises people with ALS in different stages or diagnoses, their caregivers, and healthy research participants (controls). Broad Geographic Distribution In collaboration and consultation with people with lived experiences with ALS (pALS and cALS) and in collaboration with leading clinical research experts and clinicians treating people with ALS, EverythingALS was convinced that the gaps could be filled by taking the tests out of the clinic and taking them to the participants, in their own homes. This new methodology, rooted in remote monitoring, sensor-driven data capture, and human experience support, hopes to foster engagement and collaboration between pALS, caregivers, researchers, and drug companies through an open-innovation platform approach to further studies using other digital data capture modalities beyond speech. This allowed for pALS from all over the country to contribute to the Austen Study. Ethnic Inclusion Access and Equity Remote study engagement, driven by diverse content marketing and awareness-raising of the EverythingALS mission and Citizen-driven research, has consistently delivered greater participant diversity compared with natural history study demographics performed on-site. However, recruitment and participation among African Americans remain lower than desired to achieve representation targets among all major ethnicities. EverythingALS is committed to improving this representation through direct feedback and guidance from black and African American participants, as well as collaborating with key stakeholders in engaging African American potential participants.” Request access to the Open Data Submit

Alex Young Project Manager Phone: 123-456-7890 Email: info@mysite.com Address: 500 Terry Francine Street San Francisco, CA 94158 Date of Birth: March 14th, 1984 A Bit About Me Everybody has a story, and your visitors would love to hear yours. This space is a great opportunity to give a full background on who you are and what you have to offer at your next job. Double click on the text box to start editing your content and make sure to add all the relevant details you want site visitors to know. Use this space to talk about how you started and share your professional journey. Explain your core values, your commitment to the workplace, and how you stand out from the crowd. Add a photo, gallery, or video for even more engagement. Work Experience June 2025 - April 2026 July 2024 - May 2025 January 2023 - June 2024 This is a Job Description. Briefly describe your specific position, including details about important achievements and milestones. Make sure to include relevant skills and highlights, and don't forget to adjust the timeframe in the subtitle. This is a Job Description. Briefly describe your specific position, including details about important achievements and milestones. Make sure to include relevant skills and highlights, and don't forget to adjust the timeframe in the subtitle. This is a Job Description. Briefly describe your specific position, including details about important achievements and milestones. Make sure to include relevant skills and highlights, and don't forget to adjust the timeframe in the subtitle. Let's Get Social

EVERYTHING ALS Pathfinders Everything ALS Pathfinders' vision is to empower individuals affected by ALS and their families. Our threefold mission focuses on: Our main priority is to provide support for individuals with ALS, from offering care to seeking a cure. As an Everything ALS Pathfinder, we wholeheartedly welcome you into our community, a place where you will never have to feel isolated. This is a community where you belong, where your voice is heard, and your experiences are valued. Let's come together and provide unwavering support to help each other Live a fulfilling life despite the difficulties we may face with ALS. 1. Physical Empowerment: We are dedicated to finding practical solutions and resources to alleviate the physical challenges associated with ALS, aiming to improve the quality of life for patients as their conditions evolve. 2. Mental Resilience: We're here to support you at all times. Our goal is to improve the mental well-being of people with ALS, caregivers, and their families by providing ongoing support and fostering a sense of community. You are not alone in this journey. 3. Spiritual Support: By addressing spiritual concerns, we aim to provide a comprehensive approach to healing, ensuring individuals find solace and meaning amid the challenges they face. My name is Willard Blackwell . I was diagnosed with ALS in May of 2022. I had fallen while playing pickleball, which prompted the doctors to investigate my symptoms. As a professional singer and musician leading the Gator Nation Band, I have encountered daily challenges due to the loss of full use of my hands or legs. I no longer perform with my band but recently sang with friends. I still try to do the things I love as long as they don't worsen my symptoms. I have learned about conserving energy, and I try not to overexert myself so I can keep moving forward. I find joy in music and comedies – anything that brings a smile to my face. This experience with ALS has taught me a lot about maintaining a positive attitude while battling this terrible disease. Initially, I was reluctant to ask for help. My friend, Kathleen, noticed my hesitation and called in my soul tribe because she knew I needed more assistance. I understand that seeking help can be difficult, but it can also be incredibly rewarding. We don't have to go through this alone. It's much better to have support to help you navigate your way. If you feel that I can support you on your journey, please don't hesitate to get in touch with me at willard@everythingals.org My name is McFinn Lovere . My experience of reversing my ALS put me on the path to being of service to others with this devastating disease. At my weakest point I was only able to move two fingers and my head. I know what 24-hour daycare means. I have experienced the feelings you take on from isolation. I had one caregiver who was excellent. I had another caretaker who looked at it as a job, not compassionate service. It is so important for your mental stability to have someone caring for you who understands the stress ALS creates for pALS and their families. I hope my and my family's experiences will help relieve some of the Stress ALS brings into your life. Your Everything ALS Pathfinder, McFinn, is reaching out; reach back. mcfinn@everythingals.org I’m Michael Montemayor , and I have a wife and three kids. We live in Washington State. I graduated from Washington State University in 2003 with a business degree. I was diagnosed with ALS in July 2023 . A lot has changed for me and my family since my diagnosis. I struggle to do some of the everyday simple tasks, but there are still a lot of things I can still do. What keeps me going is my trust in God, knowing He has a plan for me and that He is in control, which gives me peace. I also have lots of help and support from family and friends. My plan is to keep fighting against ALS and not let it control my life. I have met lots of other ALS patients who have been a blessing to me, and I hope to be able to help others with ALS as well. God Bless!! michael@everythingals.org My name is Shawn Penno. I think my years of work in the field and advocating for workers will translate nicely into helping pALS with their journey. Please reach out if you need someone to 'vent' to, help with problems, or just someone to talk to alleviate the isolation. I live in BC, Canada, and have been a care aide for 25 years, 2 in long-term care and the rest in the Community. I was diagnosed in September '23 with limb onset ALS after 16 months of 'investigating,' with a diagnosis of carpal tunnel, thoracic outlet syndrome, and such. The devastation of hearing THAT Dx—we were hoping for anything but that—really made me soul-search. Do I want to Drop everything and make a bucket list, or…I decided that my work is what really fulfills me; the gratitude I get from my clients is priceless. Work gives me the focus to stay positive and live in the moment. Something I teach in my class is we want to "enable our clients, not disable them.” This has taken on a whole new meaning now that I'm the one becoming disabled! I WANT to do what I can while I still can! I even built my own wheelchair ramp right after my Dx while still having the arm strength to do it! I can be reached at shawn@everythingals.org Siddu (Sridhar) Tummala is the CEO of Cresido Analytics. Siddu can be reached at siddu@everythingals.org My name is Anthony (Tony) Martin Varela . My better half is named Cheri and we live in Huntington Beach, California. I have two children and two grandchildren with one on the way!! I am a retired Firefighter who worked for the City of Los Angeles. I worked 35 years before Retirement. I love outdoor activities and try to get out and enjoy the fresh air as often as I can. I was diagnosed with ALS in April of 2023. After two years of wondering why I was losing weight and strength, a paramedic friend told me to see a neurologist. After doing so, I received the bad news. I keep a positive outlook as much as I can, but staying busy seems to keep my mind off of it and works the best. I am looking forward to helping in any way I can. I can be reached at tony@everythingals.org My name is Ivonne Vaughn. On April 13, 2024, I was at a lovely church garden party. I tried to step up on a platform with my right leg, it was too weak to support me. I stepped down and stepped up with my left leg. On January 16, 2025, after four MRIs, two X-Rays, one muscle biopsy and three Nerve Conduction Studies (NCS) and Electromyography (EMG) I was diagnosed with limb onset ALS. The Doctor said, “you have ALS,” I said I know I have A Loving Savior. He smiled and said no Amyotrophic Lateral Sclerosis. On the 2.5-hour drive back to our home my husband told me he was 99% certain it was ALS months earlier. He knew about ALS; I had much to learn. I threw myself into getting educated and learning all I could about ALS, available ALS resources/organizations and how to live and accept the incremental changes I was experiencing. I did this by attending a plethora of ALS groups and webinars. In ALS support groups, I see I am not alone and learn about living everyday with ALS. My goal is to help and encourage those with ALS (pALS), those caring for ALS loved ones (cALS) and to share the HOPE I have in my ALS journey. We all need good listeners in our lives. As a Pathfinder, I am here to listen, support, and encourage you. "It is during our darkest moments that we must focus to see the light." - Aristotle "Try to be a rainbow in someone's cloud." - Maya Angelou I can be reached at ivonne@everythingals.org My name is John Hudacek . The day I received my diagnosis, I knew this could be the end or a new beginning. After spending the first three months being scared, I realized that the difference was in my mind and my attitude. So, I decided to look at this chapter of my life differently. Early on I saw that many of us pALS are looking for that ray of light breaking through the drizzling overcast. If you look hard enough, you will find it. I hope to share my life experience to help others find courage and resilience and develop the skills to help us cope while others find that cure. As a veteran, I can assist other vets find the resources that make a difference in this journey. I was diagnosed in November 2021 with a limb-onset, non-dominant arm. Slow progressing, just now starting to weaken my other arm. Now is the time to discover the hidden strength in each of us. I am honored to hold your hand on this journey. You can contact me at johnhudacek@everythingals.org My name is Kathleen McCallum , and for the past two years, I have been helping my friend Willard, who was diagnosed with ALS in 2022. I asked him if he wanted to do a documentary to help him navigate his ALS in a creative way and bring hope. Our Journey of Hope documented the positive steps we took to help Willard’s symptoms, extend his time, and detox his body in hopes of reversing his ALS symptoms. Prior to helping Willard, I fought for my mother when she had breast cancer and, later, level 4 stomach cancer. At the end of her life, she also had Lewy Body Dementia. My dad had Alzheimer’s disease, and we participated in many Alzheimer’s fundraisers as well. I have studied alternative healing since the 1980s, and I am a certified microbiome nutritional coach. My goal is to bring more hope to those suffering from this horrendous ALS disease and to bring more awareness about ALS to the world. There is hope, and if I can help provide it for you, please contact me at kathleen@everythingals.org My Name is Faith Oremland . My son was diagnosed with ALS in January 2022. If you are dealing with the challenges of being a parent to a child with ALS, issues with family communications, and learning how to live positively in the face of ALS. Being an Everything ALS Pathfinder gives me the opportunity to help others on our ALS journey. You are not alone! It's about sharing our stories, listening to each other, providing helpful information, and being there with compassion and love. "I am committed to doing whatever possible to help my son and other people with ALS and their families live their best lives. We can do this working together with hope and positivity!" My career was in health data information systems. I am an amateur storyteller of tales that teach life lessons. I love working with the people at Everything ALS and also volunteer with Compassionate Care ALS (CCALS) Mothers of ALS and the I Am ALS Legislative Affairs Team. Please get in touch with me at faith@everythingals.org These days, I live a purpose-driven life! I do what I can…WHILE I CAN! If I can make your journey any easier, or if you have any questions, let me help you find answers. My hope is to be the resource you need. Feel free to contact me at joe@everythingals.org I spent 15 years in radio and 25 years in the Music Industry (in Nashville). Through the years, I’ve worked in Finance and Real Estate and owned a bakery! Currently, I live in Baton Rouge, LA. That was what I DID…it wasn’t WHO I AM! I was diagnosed with ALS in 2012…thankfully, it’s a very slow-progressing form. When ALS took my speaking (I slur!), my whole world changed, and I lost my career. For a guy who’s always made his living talking…this is a difficult pill to swallow. But I am more than just my diagnosis! My skill set can STILL be put to good use! Even though MY speech is failing, I try to give ALS Patients a voice! Contact me at joe@everythingals.org My name is Monica Martinez , and I live in Texas. At 48, I was diagnosed with Bulbar Onset ALS. In late 2019, I noticed trouble enunciating words, which soon turned into slurred speech. As a police officer, my voice was crucial. One day, after speaking on the radio, a fellow officer texted me, asking if I had been drinking because I sounded drunk. This prompted me to seek medical advice. After years of seeing various doctors and undergoing speech therapy, in March 2023, my neurologist gave me devastating news: "Monica, you will never be able to carry your firearm again." I was bewildered. "Monica, you have Bulbar Onset ALS. I'm so sorry. You should get your affairs in order." The diagnosis of ALS was heartbreaking, but giving up my career was even harder. At 49, I was forced into early retirement after 24 years of service. Since my diagnosis, I found solace in the ALS community, realizing I was not alone. This new family provided support, and I reciprocated. Together, we are stronger. Welcome to Pathfinders! We are here to support, guide, and walk with you on this journey. You are not alone! WE GOT THIS! TOGETHER WE ARE BETTER THAN ALS! I can be reached at monica@everythingals.org My name is Doug Hill. I am 47 years old and a father of three daughters, ages 16, 14 and 12. I am a Cornell Chemical Engineer graduate, class of ’99, and have been working full time at a specialty chemical company for 26 years now. My wife is a middle school Spanish teacher. I was diagnosed with bulbar onset ALS in January of 2024. I love playing and watching sports – from football, baseball, basketball, tennis and golf to downhill skiing (my main passion!). As a family, we also enjoy small venue music concerts with artists that really connect with the audience. Since my diagnosis, I have needed to adapt continuously during my journey. It’s like a puzzle always needing a solution! There is one thing that doesn’t and will never change – my fight, my grit, my determination and my unwavering hope. ALS doesn’t define me; it has redefined me. In fact, it makes me stronger, as a Pathfinder, I am an active participant and advocate in the ALS community, and I would love to connect with you to share what I’ve found and how it has helped me in this journey. I can be reached at doug@everythingals.org My name is Cathy Cummins , like most pALS, I’ve lived an exciting and fulfilling life. And, I’m not done yet. Diagnosed with PLS in 2005, then ALS in 2008, I began a healing journey. In 2004, with left leg symptoms, I needed crutches; in 2005, a chair; and by 2008, a power chair. As a chiropractor, professor, and elite athlete, my life changed dramatically, and I felt lost. In 2009, I passed out on stage while singing with my barbershop quartet. Now, I have swallowing and autonomic issues. This journey is not easy. When I was diagnosed, my team rallied and created a plan that included a physical, chemical, and spiritual approach to healing. I’ve learned so much about myself along the way. I feel like having ALS has offered me a path to discover what life is really about. For me, it's been about balancing my energy, learning to adapt. This wasn’t possible for me to do alone. I believe we are on this journey for a reason, and we are stronger together. If you would like me to share your Journey. Reach out, and I will be a Pathfinder with you. I can be reached at cathy@everythingals.org

Careers Join us to help everyone impacted by ALS participate in Citizen-Driven Research and benefit from Open Innovation. EverythingALS offers satisfying careers for people ready to bring their talent and skills to the fight of finding a cure for ALS. We also offer critically important volunteer opportunities that empower all kinds of people to share their unique gifts to help drive our mission forward Boston Area, Remote Community Engagement Manager Reporting to the Executive Director, we are seeking a Community Engagement Manager with excellent project management and digital communications skills to join our dynamic team. This role is crucial in driving our discovery and engagement with our.. Read More

Austen Speech Study EverythingALS is building an active, growing citizen research participants to draw from the community of over 7,000 People with ALS and Caregivers who collaborate directly with leading minds at eminent research institutions, jointly executing IRB-approved studies with EverythingALS for digital biomarker research to detect subtypes of ALS progression, early diagnosis and for remote patient monitoring. Aims: Collect Data Create Objective Measures Creation of a robust, longitudinal data collection - DEI achieved Fostering engagement Data & Research Output: Cohort characteristics 1200 HOURS OF DATA 7000 SESSIONS 850 PARTICIPANTS Citizen Driven Rapid Recruitment EverythingALS implemented a grassroots effort to recruit participants from our patient support community. With a reach that expands to 7,000 email subscribers, over 300,000 YouTube viewers, and 5,000 total attendees to our weekly Fireside Chats and ALS Expert Talk Series presentations, our organic method of recruitment is built on the solid reputation EverythingALS.org has secured by gaining patient trust as a leader in the research field. The membership comprises people with ALS in different stages or diagnoses, their caregivers, and healthy research participants (controls). Broad Geographic Distribution In collaboration and consultation with people with lived experiences with ALS (pALS and cALS) and in collaboration with leading clinical research experts and clinicians treating people with ALS, EverythingALS was convinced that the gaps could be filled by taking the tests out of the clinic and taking them to the participants, in their own homes. This new methodology, rooted in remote monitoring, sensor-driven data capture, and human experience support, hopes to foster engagement and collaboration between pALS, caregivers, researchers, and drug companies through an open-innovation platform approach to further studies using other digital data capture modalities beyond speech. This allowed for pALS from all over the country to contribute to the Austen Study. Ethnic Inclusion Access and Equity Remote study engagement, driven by diverse content marketing and awareness-raising of the EverythingALS mission and Citizen-driven research, has consistently delivered greater participant diversity compared with natural history study demographics performed on-site. However, recruitment and participation among African Americans remain lower than desired to achieve representation targets among all major ethnicities. EverythingALS is committed to improving this representation through direct feedback and guidance from black and African American participants, as well as collaborating with key stakeholders in engaging African American potential participants.” Request access to the Open Data Submit