Community & Stories Reporting
Finding meaning together in life after 16 years with ALS
Relevant to understanding long-term life and meaning with ALS
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News & Culture Reporting
ALS Nexus 2026: Speaker shares hope navigating mom’s ALS
Relevant to families seeking perspectives on navigating a parent’s ALS.
Advocacy
The NIH NeuroBioBank (NBB) is a federated program supporting seven brain banks across the United States.
Relevant to researchers interested in the infrastructure supplying donated brain tissue.
News & Culture Reporting
'Pretty remarkable' man living with MND for 29 years after diagnosis
Offers a rare long-term lived perspective on MND and survival.
News & Culture Reporting
Sterling K. Brown details mom's eight-year battle with ALS
Relevant to families seeking recognition of the realities of long-term ALS caregiving
Advocacy ReportingMainly relevant to England.
Terminally ill campaigner’s urgent message to Andy Burnham
Relevant to people following advocacy about terminal illness and public services
News & Culture Reporting
Glasgow grandfather shares reality of MND ahead of major research event
Relevant to people seeking recognition of lived experience and awareness of MND.
Advocacy ReportingMainly relevant to England.
Free event aims to raise funds for motor neurone disease charity
Relevant to people seeking local charity support or community activities
News & Culture ReportingMainly relevant to Oklahoma.
Spaghetti dinner fundraiser supports Moore Lt. Terrance Coleman in ALS battle
Relevant to people seeing public support and solidarity around an ALS battle.
Advocacy
Meet Beth: Introducing our new Research Engagement and Involvement Manager
Relevant to researchers seeking community involvement, inclusive recruitment and collaboration opportunities
News & Culture ReportingUpdated
Sandra Bullock speaks publicly about partner Bryan Randall’s private ALS battle
Relevant to people seeking public perspectives on bereavement and ALS/MND visibility.
Community & Stories Reporting
How I learned to live — and thrive — with ALS
Relevant to people seeking lived experience and ways of adapting to life with ALS
Community & Stories Discussion
Pursue creativity, keep on learning and doing
Relevant to people seeking meaningful activities and ways to maintain engagement
Advocacy Reporting
ALS Nexus 2026: It ‘takes us all’ to change the future of ALS
Relevant to people following community efforts and future ALS priorities
Community & Stories Discussion
This is how it ended
Relevant to families preparing for or reflecting on disease progression and loss
AdvocacyMainly relevant to the United Kingdom.
Standing alongside families through every stage of MND
Relevant to families needing guidance on difficult conversations, education, counselling and bereavement support.
Community & Stories Discussion
Home from final mother/daughter trip
Relevant to families navigating final trips and shared experiences near end of life.
Community & Stories Discussion
Using Voice AI tools to record audio stories for family/grandchildren.
Relevant to people exploring voice-preserving ways to share stories with loved ones
Community & Stories Discussion
Monthly MEGATHREAD: Research and Feedback Outreach
Relevant to people sharing experiences and feedback about ALS research.
Community & Stories Discussion
Next Steps / Saying Hello
Relevant to people seeking connection with others affected by ALS/MND
Community & Stories Discussion
Neglect in My Mother's ALS Care, Family Denial, and Caregiver Burnout – Need Perspective & Advice
Relevant to caregivers facing neglect concerns, family denial, and burnout.
Community & Stories Compass
Will I Still Be Alive on My 40th Birthday?
Offers a specific reflection on living with uncertainty, milestones and communication changes.
Community & Stories Reporting
Embracing the pandemonium in life with ALS
Relevant to lived experience and emotional coping with ALS
Community & Stories Discussion
A tribute to my dad: an inventor who fought ALS for over 10 years, and a thank you to this community
Relevant to families processing long-term caregiving and bereavement
Community & Stories Discussion
HE STOOD UP!!! FOR THE FIRST TIME IN 6 MONTHS HE STOOD UP!!!
Relevant to families looking for hopeful examples during a difficult period
Advocacy
Meet Katie, the newest member of the Research Team
Provides background on FUS experiments and points to an emerging MND clinical trial
Community & Stories Discussion
Using the toilet
Relevant to caregivers supporting toileting and bathroom needs
Community & Stories Reporting
ALS limits the shared experiences my husband and I can enjoy
Relevant to families adapting shared experiences around progressive disability
Community & Stories Reporting
Knowing my body isn’t my enemy helps me be at peace with ALS symptoms
Relevant to living with ALS symptoms and finding acceptance.
AdvocacyHuman
Assisted living regulations were linked to higher hospice quality ratings
Relevant to researchers studying hospice outcomes, staffing regulations, and care quality.
Community & Stories Reporting
Guest Voice: The collateral damage of ALS
Relevant to understanding collateral effects on families and caregivers.
Advocacy ReportingMainly relevant to the United States.
House passes bill to renew federal law for ALS research and care
Relevant to future ALS research funding and access to care.
Community & Stories Reporting
Summer brought moments of normalcy while living with ALS
Relevant to people seeking lived experience of maintaining normal routines with ALS
Community & Stories Reporting
ALS and wildfire smoke remind me there’s only so much I can control
Relevant to people living with ALS navigating environmental hazards and personal uncertainty
Advocacy
MND Association among UK's top charity research funders
Relevant to researchers monitoring funding opportunities, investment scale and peer-review processes.
AdvocacyMainly relevant to the United Kingdom.
Our campaign features at LGA Conference 2026
Relevant to people seeking faster housing adaptations and Disabled Facilities Grant support
Advocacy
Fuelling the future of MND research
Mainly of interest to researchers tracking early-career networks, collaboration and MND research priorities.
Advocacy
MND EnCouRage UK 2026: celebrating five years of supporting early career researchers
Mainly of interest to researchers interested in early-career collaboration, training and MND research directions.
Community & Stories Reporting
PBS documentary on runner with ALS explores identity, caregiving
Relevant to families seeking insight into caregiving experiences and emotional challenges.
AdvocacyCommentaryHuman
A journal article warns that consumer AI can misdiagnose ALS
Relevant to clinicians managing AI-mediated self-diagnoses and diagnostic communication.
AdvocacyHuman
Moral distress is common among European healthcare professionals working in motor neuron disease
Relevant to professionals addressing moral distress, burnout and retention in MND care.
AdvocacyMainly relevant to England.
Royal seal of approval for our outstanding volunteers
Relevant to people seeking local MND Association support and community connections
Advocacy
FaTHoM day 2026: Supporting families affected by inherited MND and FTD
Relevant to relatives considering genetic counselling, testing and family support
Community & Stories Reporting
Ex-NFL running back says he ‘chose to fight’ after his ALS diagnosis
Relevant to people seeking lived-experience perspectives after an ALS diagnosis
Community & Stories Discussion
Five Years Later
Offers firsthand insight into adapting mobility, communication, nutrition and daily life over five years.
Community & Stories Reporting
Planting seeds of hope in life with ALS
Relevant to people seeking hope and perspectives on living with ALS
AdvocacyMainly relevant to England.
Government minister calls for ‘fast track passports’ after Association campaign
Relevant to people seeking faster social-care access, home adaptations and financial support after diagnosis
Community & Stories Compass
Keith's special day
Relevant to people balancing MND with employment and adapting mobility at work
Community & Stories Reporting
This ALS caregiver is learning to hit the pause button
Relevant to caregivers reflecting on pacing, stress and sustainable caregiving.
Community & Stories Reporting
Adult children of parents with ALS may need more support, study finds
Relevant to supporting adult children coping with a parent's ALS.
Community & Stories Reporting
A funny thing happened on the way to the ALS forums
May offer a relatable perspective on participating in ALS forums
Advocacy Compass
Clinical trials need to leave the clinic
Mainly of interest to researchers exploring patient-centred, decentralised and subgroup-sensitive trial designs
Community & Stories Reporting
What holding on looks like after 16 years of living with ALS
Relevant to lived experience and coping over many years with ALS/MND
Community & Stories Discussion
Japan with ALS: My Honest Experience
Practical firsthand guidance on accessible international travel with ALS and a power wheelchair
Community & Stories Compass
The conclusions I reach when I imagine life without ALS
Relevant to people seeking lived experience of imagining life without ALS
Community & Stories Reporting
Living simply with ALS means taking it one absurdity at a time
Relevant to people seeking lived-experience perspectives on adapting to ALS
Advocacy Reporting
MLB, advocacy groups step up to the plate for ALS on annual Lou Gehrig Day
Relevant to seeing public awareness and advocacy for ALS.
Community & Stories Reporting
‘Emily in Paris’ actor Pierre Deny dies following severe case of ALS
Relevant to families looking for personal accounts of severe ALS and loss.
Community & Stories Reporting
Why I continue to volunteer and stay involved in ALS causes
Relevant to lived experiences and staying connected with ALS advocacy.
Community & Stories Reporting
The ALS community ‘could use a little mercy now’
Relevant to people seeking recognition of the emotional burden of living with ALS/MND
AdvocacyCase reportHuman
A case report describes organ retrieval after voluntary assisted dying in a man with end-stage ALS
Relevant to clinicians involved in assisted dying, anaesthesia and organ procurement.
Community & Stories Reporting
Practicing radical acceptance is difficult for me in life with ALS
Relevant to people navigating the emotional realities of living with ALS.
Advocacy Reporting
Drink One for Dane fundraiser returns May 15 to support ALS awareness
Relevant to people interested in ALS awareness and community fundraising.
Community & Stories Reporting
Online forums help ALS community members make connections
Relevant to people seeking peer connection and shared ALS experiences
Advocacy Reporting
ALS Association invests $3M to bring access to care closer to home
Relevant to people seeking more accessible ALS care and support services
Community & Stories Discussion
The People Who Carry Us
Describes the hidden mental load, sacrifices and practical pressures caregivers may recognise.
Community & Stories Reporting
How my husband and I try to teach our children well in life with ALS
Relevant to spouses and parents seeking lived experience about supporting children during ALS.
Advocacy Reporting
Seeking to harness ‘real momentum’ is goal of this year’s ALS Awareness Month
Relevant to people seeking ALS awareness activities and community engagement.
Community & Stories Reporting
How I stimulate my mind while caring for my husband with ALS
Provides lived experience about maintaining wellbeing while caring for a spouse with ALS.
AdvocacyReviewHuman
Neurology and ALS/MND organizations establish a global partnership
Relevant to clinicians following guideline development, education, capacity building and clinical collaboration.
Community & Stories Discussion
When Did I Become My Illness?
Relevant to people navigating identity, disability and changing independence after diagnosis
Advocacy Compass
There’s No Map for This
Relevant to people seeking personalised, timely ALS/MND information and support.
Community & Stories Compass
Redefining Independence
Relevant to adapting independence, communication and daily routines with MND
Community & Stories Discussion
The Fine Line Between Husband and Carer
Relevant to partners balancing caregiving, intimate care and maintaining a couple relationship.
Community & Stories Discussion
When Friendship Changes After Illness
Relevant to understanding changing friendships and loneliness after diagnosis.
Community & Stories Compass
On the Inside of a Clinical Trial
Relevant to people considering trial participation and understanding what taking part involves
Advocacy Compass
Improving continuity of ALS and MND care: a pilot with MNDA South Africa
Relevant to families currently carrying fragmented care information and coordinating services.
Community & Stories Compass
My 2026 Resolution: Don’t Die
Relevant to people seeking lived-experience perspectives on daily routines and coping with ALS/MND.
Advocacy
Bringing the community together for the 36th International Symposium on ALS/MND
Covers diverse research themes, collaborations, models, biomarkers and outcome measures
AdvocacyMainly relevant to England.
Inspiring a New Generation of Scientists at New Scientist Live 2025
Relevant to researchers interested in early-career recruitment and public engagement in MND science.
Advocacy
Behind the Scenes of Peer Review
Relevant to researchers seeking insight into MND grant assessment, priorities and collaboration.
Community & Stories Compass
The plan I wish I had when I was diagnosed with ALS
Relevant to people seeking practical planning and treatment-option information after diagnosis
Advocacy
Finding Purpose, Building Connections and Expanding Horizons: Reflections from the MND EnCouRage UK Conference
Mainly of interest to researchers following early-career networks and MND research directions.
Community & Stories Compass
A conspiracy of genes, environment and time: how ALS takes hold
Relevant to people exploring lifestyle changes and sharing lived experience after diagnosis
Advocacy
Celebrating 10 years of our Non-Clinical Fellowships: looking to the present!
Mainly of interest to researchers following MND genetics, fellowships and research careers
Advocacy
Celebrating 10 years of our Non-Clinical Fellowships!
Relevant to researchers interested in fellowship funding, career development and research networks
Community & Stories Compass
Have You Heard of ALS?
Relevant to people seeking lived experience, symptom tracking, and peer support.
Advocacy
MND EnCouRage UK 2025: Encouraging the future leaders of MND research
Relevant to researchers interested in early-career development, collaboration and communicating MND research.
Advocacy
MND EnCouRage UK: Looking back at four years of supporting the next generation of MND researchers
Relevant to researchers interested in early-career networks, mentoring and research collaboration
Advocacy
Global MND awareness day: Hidden challenges of MND research
Mainly of interest to researchers following genetic risk, biomarker and early-career research perspectives
Advocacy
Meet Libby, a new member of the Research Team
Describes PhD findings on microRNA changes, cell communication and MND models.
Advocacy
Introducing Katy – one of the newest members of the Research Team
Describes fibroblast-derived brain-cell models, mitochondrial research and high-throughput screening experience.
Community & Stories Compass
Symposium Highlights: A Former Carer’s Perspective
Relevant to carers facing cognitive and behavioural changes and grief.
Advocacy
Celebrating research and collaboration at the 35th International Symposium on ALS/MND
Mainly of interest to researchers following international collaboration, methods and the field’s latest findings.
Advocacy
MND EnCouRage UK: Supporting the future leaders of MND research
Mainly of interest to researchers following early-career development and community-informed trial design
Community & Stories Discussion
When Illness Makes You Invisible
Relevant to people navigating social isolation and changing relationships after diagnosis
Community & Stories Discussion
Three Years Into ALS
Relevant to adapting mobility, communication, swallowing, fatigue and daily life with MND
Community & Stories Discussion
The Day I Was Diagnosed
Offers a firsthand account of diagnosis and living with MND.
Advocacy
Meet Gen – the latest member of our Research Team
May interest readers tracking MND genetics communication and research engagement.
Advocacy
Reuniting the MND community at the 34th International Symposium on ALS/MND
Mainly of interest to researchers following new mechanisms, biomarkers, trials and collaborations.
Advocacy
Introducing Kiran – The newest member of our Research Team
Introduces a research officer involved in the International Symposium on ALS/MND and research dissemination.
Advocacy
Symposium Preview: Meet the ALS/FTD Plenary Speakers…Part 1
Mainly of interest to researchers tracking ALS-FTD mechanisms, biomarkers and collaborations.
Advocacy
Symposium Preview: Meet the Symposium Communications Ambassadors
Introduces researchers and highlights research areas featured at the international symposium.
From Curalysis
- Clinical trials need to leave the clinic2 months ago
- There’s No Map for This5 months ago
- On the Inside of a Clinical Trial7 months ago
Summarised by Compass using AI from the source material. These are not medical advice. Always read the original source.