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Pateint Impact Stories In the News NOVEMBER 2022 Digital Biomarkers Could Reshape CNS Diagnosis, Treatment The life sciences industry continues to embrace artificial intelligence (AI), algorithms, and machine-based learning in its pursuits to collect and analyze important pharmaceutical and healthcare data. READ MORE NOVEMBER 2022 Digital Biomarkers Could Reshape CNS Diagnosis, Treatment The life sciences industry continues to embrace artificial intelligence (AI), algorithms, and machine-based learning in its pursuits to collect and analyze important pharmaceutical and healthcare data. READ MORE NOVEMBER 2022 Digital Biomarkers Could Reshape CNS Diagnosis, Treatment The life sciences industry continues to embrace artificial intelligence (AI), algorithms, and machine-based learning in its pursuits to collect and analyze important pharmaceutical and healthcare data. READ MORE NOVEMBER 2022 Woman's Husband's Health Journey Inspires EverythingALS. NBC10’s Erin Coleman speaks to Everything ALS founder Indu Navar about her husband’s own ALS diagnosis and how the group is working to better ALS research. READ MORE NOVEMBER 2022 Walk to Defeat ALS happening in North Las Vegas. Indu Navar, founder of EverythingALS, joined us to talk about how your participation helps raise funds and awareness. READ MORE NOVEMBER 2022 Non-profit conducts study to diagnose ALS quicker. In the 150 years since ALS was discovered there is still no cure or single test to diagnose the disease. READ MORE NOVEMBER 2022 New technology helping ALS patients in Louisiana. ALS, often called Lou Gehrig’s disease, is a progressive motor neuron disease that gradually robs people of their ability to walk, talk, swallow, and eventually breathe. READ MORE SEPTEMBER 2022 Q&A With Indu Navar, founder of Everything ALS. Indu Navar, founder of Everything ALS, speaks with Pharm Exec about how she lost her husband to the disease and how she's trying to improve the way its diagnosed. READ MORE SEPTEMBER 2022 EverythingALS Joins Forces with Aural Analytics, FeetMe, ZEPHYRx and Others for a First-Of-Its-Kind ALS Research Study. Patients can now apply to participate in citizen-led multi-modal digital biomarkers study for prognosis and diagnosis of ALS. READ MORE AUGUST 2022 Groundbreaking research involving artificial intelligence could diagnose ALS patients sooner Five thousand people in the U.S. are diagnosed with a neurological disease called ALS every year. Medical experts say it typically takes an average of two years to diagnose, but new research will likely make that timetable a lot shorter. READ MORE AUGUST 2022 NeuroSense Joins EverythingALS Open Innovation Consortium; Set to Enroll US and EU Patients in Phase IIb Study EverythingALS , a patient-focused non-profit that brings together patients, caregivers, physicians, researchers, and pharmaceutical companies using technological innovations and READ MORE AUGUST 2022 ‘Death by 1,000 cuts:’ How emerging tech could change the journey for ALS patients In 2016, Indu Navar’s husband, Peter Cohen, experienced the first symptom of what turned out to be amyotrophic lateral sclerosis (ALS), a progressive degenerative disease commonly known as Lou Gehrig’s disease. READ MORE JULY 2022 Healthbeat: New ALS research driven by patient-focused non-profit SCRANTON, LACKAWANNA COUNTY— New research is underway to better understand and treat ALS, a difficult disease to diagnose with no known cure. ALS patient Paul Miller of Scranton is one of the participants. READ MORE JULY 2022 Bentonville man works to help diagnose ALS sooner BENTONVILLE, Ark. (KNWA/FOX24) — A Bentonville man is dedicating his life to advocating for people with ALS and trying to help diagnose the disease sooner. READ MORE JULY 2022 These 2 Surprising Traits May Predict ALS, New Research Says Amyotrophic lateral sclerosis (sometimes called Lou Gherig’s disease, or ALS ) affects around 15,000 Americans, with about 5,000 receiving a new diagnosis each year, according to the Centers for Disease Control and Prevention READ MORE JUNE 2022 Continue that momentum from the ALS Ice Bucket Challenge by getting involved in a unique study - New Day NW Researchers want every American to start recording their voice daily. They believe this data could be used to eventually develop cures for Alzheim READ MORE MAY 2022 Patients giving voice to ALS research Back in 2014, millions of people poured icy water over their heads to spread ALS awareness and support research for the devastating neurodegenerative disease. Now tech developers want to hear your voices. READ MORE MAY 2022 Live At 9: Researchers Collecting Audio and Video to Help ALS Detection Remember the summer Americans took time to dump buckets of ice water on their heads to help fight the deadly disease ALS? This summer, there’s a more comfortable way to help researchers learn about ALS and other neurological disorders. READ MORE MAY 2022 A Connecticut man is battling a fatal disease with ‘enormous courage’. Love and his work with an ALS group give him ‘purpose’ Three years ago Austen Eadie-Friedmann, 38, had a dynamic career in the pharmaceutical/biotech field working for a Fortune 500 company and living in exciting places such as New York City, Boston and Europe, with his husband, William DeGregorio. READ MORE FEBRUARY 2022 San Francisco based nonprofit launches new ALS research A San Francisco-based nonprofit is recruiting average people to take part in ALS research KCBS Radio’s Keith Menconi explains. READ MORE FEBRUARY 2022 Mitsubishi Tanabe Pharma joins EVERYTHINGALS consortium to help accelerate biomarker discovery for Neurological diseases February 28, 2022 (San Francisco, CA) -- Today, EverythingALS.org (EALS), a patient-centric, citizen-based California nonprofit accelerating the discovery of digital biomarkers for neurological diseases such as amyotrophic lateral sclerosis (ALS), announced that Mitsubishi Tanabe Pharma Holdings America, Inc. READ MORE DECEMBER 2021 ALS, Lou Gehrig’s Disease, takes many lives, Everything ALS is doing Deb Fabricatore lost her younger brother to ALS in 2014, and became involved in ALS advocacy. Indu Navar lost her husband in 2019 and immediately stepped up into action by building a nonprofit devoted to honoring her husband. READ MORE NOVEMBER 2021 Open-Data Platforms for Direct Engagement with Patients, Researchers, and Pharma Indu Navar, CEO and Founder of EverythingALS, explores the roles of Artificial Intelligence, Machine Learning, and Brain Computer Interface in the search for a cure for ALS. She will also share innovative research studies on ALS detection, how Pharma can work with and support ALS patient advocates, and her key leadership lessons for digital health entrepreneurs and innovators. READ MORE NOVEMBER 2021 Bay Area Nonprofit Seeks 300 Volunteers in ALS Speech Study SAN FRANCISCO (CBS SF) -- A Bay Area nonprofit dedicated to advancing research on an incurable -- and fatal -- disease of the nervous system is looking for 300 more people by the end of this month to participate in the largest-ever research project on the illness. READ MORE OCTOBER 2021 EverythingALS Launches “Stories and Innovation in ALS” Podcast October 21, 2021 (Silicon Valley, CA) – 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 , READ MORE JULY 2021 Episode 30: Machine Learning for a Cause Canada has been an early leader in the AI space and there is no shortage of activity flourishing across the country. Today, we welcome Fanny Sie from Roche Canada and Indu Navar of Everything ALS to talk about machine learning and the End ALS Kaggle Challenge . READ MORE JULY 2021 New project to better identify and treat ALS uses AI and data sharing I n health, science begins with the patient. Roche believes that the only way to improve the way Canadians access care is by working with all stakeholders, including public and private organizations, patient communities and citizens. READ MORE APRIL 2021 Richard Sperry, Head of Research Partnerships and Collaborations at EverythingALS Richard Sperry, Head of Research Partnerships and Collaborations at EverythingALS, speaks about the use of biomarkers to better understand the progression of ALS. With the help of artificial intelligence, EverythingALS and their partners, Modality.ai, are tracking speech patterns to add to an expanding collection of ALS research. READ MORE APRIL 2021 EverythingALS Selected to Present at the American Academy of Neurology Annual Meeting, April 17-22 April 16, 2021 (Los Altos, CA) – EverythingALS, a California nonprofit dedicated to bringing technological innovations and data science to support people with ALS, has been selected to present its scientific research at the American Academy of Neurology (AAN) READ MORE APRIL 2021 Accelerating Rare Disease Research | Indu Navar | TEDxSantaCatalinaSchool n this moving, personal talk, Indu Navar tells how she lost her husband, Peter Cohen, to ALS and what she is doing to bring together patients, families, researchers and people everywhere to change the way that rare diseases are looked at. READ MORE MARCH 2021 The Story of Modality.AI: HealthTech Award Winner HealthTech Networking Club member and winner of the HealthTech Startup Award in January David Suendermann-Oeft, CEO and Founder of Modality.AI , spoke with the bene : studio team about what inspired him to start the company, their biggest achievements so far, and advice for startup leaders in the digital health space. READ MORE MARCH 2021 ‘End ALS Challenge’ Invites AI Community to Tackle 3 Key Questions Roche Canada’s Artificial Intelligence Centre of Excellence (AI CoE), in collaboration with Answer ALS and EverythingALS , opened a challenge that asks the global artificial intelligence (AI) community to model solutions for key questions in amyotrophic lateral sclerosis (ALS). READ MORE MARCH 2021 Roche Canada AI Centre to tackle ALS MISSISSAUGA, Ont. – The Roche Canada Artificial Intelligence Centre of Excellence (AI CoE) is excited to collaborate with Answer ALS and EverythingALS to launch an initiative called the End ALS Challenge, with the support of ALS Society of Canada, Ontario Brain Institute (OBI) and NetraMark Corp. READ MORE MARCH 2021 Roche Canada Artificial Intelligence Centre of Excellence opens digital competition to tackle ALS MISSISSAUGA, ON, March 18, 2021 /CNW/ - The Roche Canada Artificial Intelligence Centre of Excellence (AI CoE) is excited to collaborate with Answer ALS and EverythingALS to launch an initiative called the End ALS Challenge , with the support of ALS Society of Canada , Ontario Brain Institute (OBI) and NetraMark Corp READ MORE MARCH 2021

Speaker Kit ALS Expert Talk Series. Dear Speaker, We are excited to host you at our upcoming ALS Expert Talk Series. Our community looks forward to hearing from you. Please feel free to Share the announcement to your social media network and tag us. We have shared our social media handles below. Advances in ALS Research & Innovation April 1, 2026 (4PM PT | 7PM ET) 🔔 Register: everythingals.org/ events I am speaking at the next #ALSExpertTalks 🙌. Hope to see you there! #EndALS #EverythingALS #ALS Facebook X (Twitter) LinkedIn Copy link Download

About Us We believe the technology will be a key enabler for the innovation to end ALS, we are here to bridge the gap between patients, research and technology. Our diverse team is composed of patient advocates, students, nurses, physicians, entrepreneurs, artificial intelligence engineers, biologists, ALS patients, and spiritual guidance from one person who has reversed ALS. We are here to help provide information to all of those affected by ALS. EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation, a 501(3)c organization, bringing technological innovations and data science to support efforts -- from care to cure -- for people with ALS, by offering a open-data platform for direct engagement with patients, caregivers, researchers and drug companies. PC: Peter Cohen How YOU Can Get Involved Write to us, we would love to hear from you. How did you hear about us? How did you hear about us? How did you hear about us? Submit

Future Events Expert Talk Series Fireside Chats Hope Untangled on Mar 18th Wed, Mar 18 Virtual Event More info RSVP Advances in ALS Research & Innovation with Nicholas Maragakis Wed, Apr 01 Virtual Event More info RSVP Hope Untangled on May 13th Wed, May 13 Virtual Event More info RSVP Hope Untangled on June 10th Wed, Jun 10 Virtual Event More info RSVP Hope Untangled on July 8th Wed, Jul 08 Virtual Event More info RSVP Hope Untangled on Aug 5th Wed, Aug 05 Virtual Event More info RSVP Hope Untangled on Sept 2nd Wed, Sep 02 Virtual Event More info RSVP Hope Untangled on Sept 30th Wed, Sep 30 Virtual Event More info RSVP Hope Untangled on Nov 25th Wed, Nov 25 Virtual Event More info RSVP Hope Untangled on Dec 23rd Wed, Dec 23 Virtual Event More info RSVP

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 Pathfinders Emeritus 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 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

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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. LOGIN > Click here to Register or Login if you are in the study Advancing the Diagnosis and Prognosis of ALS from Speech WE ARE LOOKING FOR Individuals Diagnosed or Probable with Amyotrophic Lateral Sclerosis (ALS) and Healthy Participants to help give 5 speech r ecordings with total 75 minutes over 5 months Our 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. Meet Amazing Vivian Rojas Diagnosed with ALS in 2018 If you are interested in the study, please contact us Your connection to ALS I am interested to participate in * The Speech Study to advance drug trials The Radcliff : Multi-disciplinary Study The ALS Gene Carrier Study All of the above Do you use Assistive Devices ? For Walking For Breathing Breathing Device CPAP Other Cane Rollator Walker Wheelchair Other What is your Shoe size? What is your T-shirt size? Women Men Country Submit Protocol Number: 2020-06-PI42 | Sponsor: Peter Cohen Foundation Contact Us Email: speech@everythingals.org

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

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Past Events HopeUntangled Virtual Event Details Fireside Chat with Pathfinders Feb 11, 2026 Virtual Event Details A New Diagnostic Biomarker for ALS with Dr. Sandra Banack and Dr. Rachael Dunlop Virtual Event Details To Kill a Motor Neuron: Model systems in the lab to understand ALS in the clinic with Dr. Stephen Kolb Virtual Event Details Fireside Chat with Pathfinders Jan 14, 2026 Virtual Event Details Chloroviruses in ALS with Dr. Gary Pattee Virtual Event Details Fireside Chat with Pathfinders Dec 17, 2025 Virtual Event Details Healey ALS MyMatch Overview & Updates with Dr. Suma Babu Virtual Event Details Giving Thanks with EverythingALS Virtual Event Details Fireside Chat with Pathfinders Nov 19, 2025 Virtual Event Details Palliative Care for ALS - What is it? How can it help? How to access it? with Dr. Kara Bischoff Virtual Event Details Updates on ALS Clinical Trials from Regeneron and VectorY Virtual Event Details Fireside Chat with Pathfinders Oct 22, 2025 Virtual Event Details Signals from The Outer Limits: What I've Learned from Slow Progressors and ALS Reversals, and How I Am Trying To Make... Virtual Event Details ALS BioBanking in the 21st Century with Dr. Brent Harris Virtual Event Details Fireside Chat with Pathfinders Sept 24, 2025 Virtual Event Details Genetics and ALS: What New Discoveries Mean for You and Your Family with Ms. Jennifer Roggenbuck Virtual Event Details Tracking the Invisible: How Science Is Revealing ALS's Environmental Roots with Dr. Eva Feldman Virtual Event Details Load More

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.