#als-awareness

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fromIndependent
10 hours ago

'Living with a rare disease like Hurler syndrome hasn't held me back - it's given me the best life'

One in every 17 people has a rare disease - I'm one of those people. I have mucopolysaccharidosis type I. It's more commonly known as 'Hurler syndrome', but even when I use that term, no one I meet has ever heard of it.
Medicine
fromwww.bbc.com
1 day ago

'It's an honour to give bikes to kids with cancer'

"The bikes we give are brand new, because part of it is the delight of getting a new bike. These kids have been in treatment for so long and can miss out on big stages of development."
Cancer
#als
Berlin music
fromwww.bbc.com
4 days ago

Dancer with ALS uses brainwaves to perform again through avatar

Breanna Olson, an ALS patient, danced again using brainwave technology to control a digital avatar on stage in Amsterdam.
Running
fromTODAY.com
1 week ago

I Was a Division 1 Athlete Diagnosed With ALS at 30. Now I'm Pregnant With My First Child

Running defined my life until ALS changed everything, leading to a diagnosis that reshaped my understanding of health and strength.
Running
fromTODAY.com
1 week ago

I Was a Division 1 Athlete Diagnosed With ALS at 30. Now I'm Pregnant With My First Child

Running defined my life until ALS changed everything.
Berlin music
fromwww.bbc.com
4 days ago

Dancer with ALS uses brainwaves to perform again through avatar

Breanna Olson, an ALS patient, danced again using brainwave technology to control a digital avatar on stage in Amsterdam.
Running
fromTODAY.com
1 week ago

I Was a Division 1 Athlete Diagnosed With ALS at 30. Now I'm Pregnant With My First Child

Running defined my life until ALS changed everything, leading to a diagnosis that reshaped my understanding of health and strength.
Running
fromTODAY.com
1 week ago

I Was a Division 1 Athlete Diagnosed With ALS at 30. Now I'm Pregnant With My First Child

Running defined my life until ALS changed everything.
#neurodiversity
fromeLearning Industry
4 days ago
Online learning

Honoring Autism Acceptance Month 2026: Rethinking Soft Skills Training For Neurodiverse Employees

Soft skills training must be adapted to support neurodiverse employees, focusing on their unique strengths rather than traditional social norms.
fromPsychology Today
6 days ago
Education

Rethinking Social Skills for Neurodivergent Kids

Neurodivergent kids seek connection through shared interests and authenticity, not traditional social norms.
Online learning
fromeLearning Industry
4 days ago

Honoring Autism Acceptance Month 2026: Rethinking Soft Skills Training For Neurodiverse Employees

Soft skills training must be adapted to support neurodiverse employees, focusing on their unique strengths rather than traditional social norms.
Education
fromPsychology Today
6 days ago

Rethinking Social Skills for Neurodivergent Kids

Neurodivergent kids seek connection through shared interests and authenticity, not traditional social norms.
Medicine
fromTODAY.com
20 hours ago

After a Traumatic Brain Injury, One Family Found Hope in a Pair of Lululemon Pants

A mother faced her son's traumatic brain injury after a car accident, refusing to give up hope despite grim medical recommendations.
Social justice
fromPsychology Today
1 week ago

Extending Awareness to Every Autistic Person

Autism awareness must encompass all autistic individuals, acknowledging their unseen struggles regardless of perceived high-functioning status.
fromIndependent
1 day ago

Stage 4 Melanoma: 'I was diagnosed with stage 4 cancer in 2011 and given nine months. I have been in remission since 2016'

Maria Kilcommins was living life as normal with no symptoms whatsoever of cancer when she experienced a seizure on December 19, 2011. This unexpected event led to her cancer diagnosis, which drastically changed her life.
Cancer
#sanfilippo-syndrome
SF parents
fromwww.bbc.com
1 week ago

My daughter has childhood dementia and may not live past 16

Sophia Scott's family faces the challenges of her rare, incurable condition, Sanfilippo syndrome, which causes childhood dementia and impacts their lives significantly.
SF parents
fromwww.bbc.com
1 week ago

My daughter has childhood dementia and may not live past 16

Sophia Scott's family faces the challenges of her rare, incurable condition, Sanfilippo syndrome, which causes childhood dementia and impacts their lives significantly.
UK news
fromwww.independent.co.uk
1 week ago

Jesy Nelson proud' as NHS announces rollout of SMA screening for newborns

The rollout of spinal muscular atrophy screenings for newborns will begin earlier than expected due to advocacy efforts by Jesy Nelson.
Mental health
fromPsychology Today
1 week ago

Remembering an Angel With a Traumatic Brain Injury

Laura, despite severe brain damage, radiated joy and built meaningful connections with caregivers, enriching their lives through her infectious spirit.
#parkinsons-disease
Medicine
fromNews Center
5 days ago

Experimental Drug Lowers Parkinson's-Linked Protein in Early Trial - News Center

BIIB094, an experimental drug targeting LRRK2, shows promise in safely reducing gene activity linked to Parkinson's disease in a clinical trial.
fromIndependent
3 weeks ago
Mental health

Parkinson's disease: 'People presumed I was hung over when I was shaking - I put it down to anxiety'

Medicine
fromHarvard Gazette
3 weeks ago

You don't fight Parkinson's without 'raw moments.' She shared them. - Harvard Gazette

Sue Goldie shares her personal journey with Parkinson's disease to raise awareness and highlight the complexities of living with the condition.
Medicine
fromNews Center
5 days ago

Experimental Drug Lowers Parkinson's-Linked Protein in Early Trial - News Center

BIIB094, an experimental drug targeting LRRK2, shows promise in safely reducing gene activity linked to Parkinson's disease in a clinical trial.
fromIndependent
3 weeks ago
Mental health

Parkinson's disease: 'People presumed I was hung over when I was shaking - I put it down to anxiety'

Medicine
fromHarvard Gazette
3 weeks ago

You don't fight Parkinson's without 'raw moments.' She shared them. - Harvard Gazette

Sue Goldie shares her personal journey with Parkinson's disease to raise awareness and highlight the complexities of living with the condition.
Fundraising
fromwww.businessinsider.com
2 weeks ago

I started a cancer nonprofit at 14 after losing my grandfather and teacher. Now it has 40,000 youth volunteers.

Olivia Zhang founded Cancer Kids First to support children with cancer after losing loved ones to the disease.
Cancer
fromwww.nytimes.com
1 week ago

What Is It Like to Get Cancer When You're Young?

Cancer is increasingly affecting individuals under 50, impacting their lives and relationships significantly.
Medicine
fromLos Angeles Times
6 days ago

Chicago Bears Pro Bowler Steve McMichael diagnosed with CTE a year after ALS death

Steve McMichael was diagnosed posthumously with CTE, raising awareness of its potential link to ALS among NFL players.
fromwww.npr.org
3 weeks ago

New autism group meets to counter MAHA's 'ideological agenda'

We in the autism science and advocacy community were just appalled at the way he went about selecting members. The current committee has been hijacked by a narrow ideological agenda that does not reflect either the broad autism community or the state of autism science.
US news
fromwww.theguardian.com
3 weeks ago

Father of meningitis victim, 18, tells of family's immeasurable' devastation

We are incredibly proud parents to two wonderful daughters. Juliette is a force in this world. With her beautifully positive energy, she spread fun, love and happiness to those around her and she continues to do so now.
Public health
#alzheimers-disease
Medicine
fromSocial Media Explorer
1 week ago

The Silent Two-Decade Build-Up of Alzheimer's - Social Media Explorer

Changes in the brain associated with Alzheimer's can begin years before symptoms appear, yet assessments often occur only after noticeable cognitive decline.
Medicine
fromInsideHook
1 month ago

Could This Type of Cell Help Prevent Alzheimer's Disease?

Tanycytes in the hypothalamus show degradation in Alzheimer's patients, suggesting these cells may play a crucial role in tau protein removal and disease development.
Cancer
fromSlate Magazine
2 weeks ago

I Was Once Given Just Three Years to Live. A Specific Kind of Hope Could Help Cancer Patients Like Me.

A hip injury worsened over a year, leading to an MRI that revealed serious health issues requiring medical attention.
Medicine
fromwww.businessinsider.com
1 week ago

POTS explained: The disorder that forced OpenAI exec Fidji Simo to take medical leave

Fidji Simo is taking medical leave to treat postural tachycardia syndrome, a condition affecting the autonomic nervous system.
Fundraising
fromBlue Seat Blogs
4 weeks ago

Support BSB at the Play Like A Pro Charity Games for neuroblastoma research - Blue Seat Blogs

BSB supports Band of Parents' Play Like A Pro Charity Games on MSG ice to raise funds for neuroblastoma research, aiming to reach a $1,200 donation goal.
Medicine
fromInsideHook
1 week ago

Meet the Former UFC Fighter Battling MS One Day at a Time

Alberto Crane, diagnosed with multiple sclerosis, maintains a fighter's mentality and continues to pursue Brazilian jiu-jitsu despite his condition.
fromIndependent
1 week ago

'Motor neurone disease had never crossed my mind, but in that moment I was told, my life changed forever'

When Lorraine Kelly Donnelly felt a cramp in her left hand at the start of 2025, she didn't think anything of it. But when a week later the pain was still there, she made an appointment to see her GP.
Medicine
Mental health
fromPsychology Today
4 weeks ago

Living a Great Life With an Invisible Disability

Invisible disabilities are medically real conditions affecting millions, requiring accommodation despite lacking visible signs, and deserve recognition without judgment or assumption of fraud.
Cancer
fromwww.theguardian.com
3 weeks ago

I have stage four cancer there will be no cure, but death isn't necessarily imminent: this is how it feels to live in the long middle

Stage four lung cancer transforms breath into a finite currency, dictating daily life and relationships amidst medical advancements that extend survival.
fromwww.bbc.com
2 weeks ago

New hope for children with severe epilepsy

The condition, called recessive RNU2-2-related neurodevelopmental disorder, is associated with seizures and severe developmental delay in children less than a year-old, in areas such as speech and walking.
Medicine
Science
fromNature
1 month ago

Mysterious brain cells clear proteins that contribute to Alzheimer's disease

Tanycytes, specialized brain cells, transport toxic tau proteins from cerebrospinal fluid into the bloodstream, but malfunction in Alzheimer's disease, causing tau accumulation in the brain.
Apple
fromWIRED
1 month ago

What It's Like to Have a Brain Implant for 5 Years

Brain-computer interface technology enables users to control multiple devices and applications through thought, progressing from simple clicks to complex 2D cursor movements and smart home automation.
Cancer
fromIndependent
4 weeks ago

'I survived breast cancer but I lost three siblings to the disease'

A mammogram in 2015 detected breast cancer in Síle Nic Suibhne, whose family history included her sister's previous diagnosis, prompting her participation in BreastCheck screening.
#rare-ireland
Fundraising
fromIrish Independent
1 month ago

'Abseiling 44 metres in Croke Park is a challenge, but we're doing it for a big cause' - brave mothers undertake charity leap for children with rare diseases

A group is fundraising for Rare Ireland, which serves 300,000 people with rare diseases and receives no government funding, relying entirely on donations and raised funds.
Fundraising
fromIrish Independent
1 month ago

'Abseiling 44 metres in Croke Park is a challenge, but we're doing it for a big cause' - brave mothers undertake charity leap for children with rare diseases

A group is fundraising for Rare Ireland, which serves 300,000 people with rare diseases and receives no government funding, relying entirely on donations and raised funds.
Fundraising
fromIrish Independent
1 month ago

'Abseiling 44 metres in Croke Park is a challenge, but we're doing it for a big cause' - brave mothers undertake charity leap for children with rare diseases

A group is fundraising for Rare Ireland, which serves 300,000 people with rare diseases and receives no government funding, relying entirely on donations and raised funds.
Fundraising
fromIrish Independent
1 month ago

'Abseiling 44 metres in Croke Park is a challenge, but we're doing it for a big cause' - brave mothers undertake charity leap for children with rare diseases

A group is fundraising for Rare Ireland, which serves 300,000 people with rare diseases and receives no government funding, relying entirely on donations and raised funds.
fromwww.bbc.com
1 month ago

Police probe breast cancer treatment allegations

A report last year found unnecessary surgeries were carried out, cancers were missed and poor standards of care were delivered at the University Hospital of North Durham and Darlington Memorial Hospital. CDDTF said it wanted to support the patients it had let down, including by offering access to psychological support, and to ensure they knew how to make a claim or raise concerns with police.
Cancer
fromwww.bbc.com
3 weeks ago

I went to bed with a sore ear, meningitis put me in a coma

Mark McNamee said, 'I still can't get my head around it. For just a simple ear infection to basically, it's nearly destroyed your life for you.'
Medicine
#eric-dane
fromFortune
1 month ago
Medicine

Eric Dane, 'Grey's Anatomy' actor who became an ALS awareness advocate, dead at 53 | Fortune

fromFortune
1 month ago
Medicine

Eric Dane, 'Grey's Anatomy' actor who became an ALS awareness advocate, dead at 53 | Fortune

Science
fromNews Center
2 months ago

Targeting Key Proteins in Fight Against ALS - News Center

RAD23 controls both degradation and stabilization of misfolded proteins; reducing RAD23 enhances clearance of disease-linked aggregates, offering a therapeutic target for neurodegenerative proteostasis dysfunction.
Medicine
fromwww.bbc.com
3 weeks ago

Mother 'absolutely shocked' to find daughter had meningitis

A 21-year-old woman was hospitalized with meningitis after collapsing at home; her flatmate's quick action and antibiotic treatment helped save her life.
Medicine
fromNature
4 weeks ago

Autism in older adults: the health system must recognize its effects

Autism research neglects adults, yet older autistic individuals face higher rates of heart disease, Parkinson's-like symptoms, osteoporosis, and dementia, requiring systematic investigation and adapted healthcare pathways.
fromBuzzFeed
1 month ago

I Made My Son A Promise When He Was Born. 20 Years Later, I Was Devastated To Break It.

I resisted. How could I keep my promise and still consider a group home? The professionals all said the same thing in different words: You can't do this alone. What happens when you get older? He needs a trained staff. His physician, who'd known Chris since he was 3, was even more direct: A group home could offer the structure, safety and supervision I couldn't provide alone.
Parenting
fromBrooklyn Eagle
2 months ago

Maimonides Health opens new Women's Neurology Center

MAIMONIDES HEALTH HAS OPENED THE FIRST WOMEN'S NEUROLOGY CENTER in New York City, a comprehensive-specialty neurology and OB/GYN care practice designed to meet women's unique neurologic health care needs throughout the lifespan. The first of its kind in the five boroughs, this neurology center will utilize a comprehensive care model based on emerging medical knowledge that helps women of all ages achieve long-term neurologic health.
Brooklyn
US politics
fromwww.independent.co.uk
1 month ago

Doddie Weir's widow takes on cycling challenge for MND charity

The Independent seeks donations to fund on-the-ground journalism while Kathy Weir will cycle 750 miles to raise funds for the My Name'5 Doddie Foundation.
Cancer
fromwww.amny.com
1 month ago

Long Island man is riding for a cure while living with a brain tumor | amNewYork

Anthony Greco, battling a recurring brain tumor since high school, completes eight-hour solo cycling marathons annually to raise funds for rare cancer research in honor of a deceased friend.
Health
fromwww.theguardian.com
1 month ago

Christina Applegate reveals she is largely confined to bed due to multiple sclerosis

Christina Applegate, diagnosed with multiple sclerosis five years ago, is now largely confined to bed due to pain from movement, though she prioritizes taking her daughter to school as their special time together.
Science
fromNature
2 months ago

My mission to make life more user friendly for the disability community

Josh Miele is a blind scientist and adaptive-technology inventor who uses lived experience, activism, and rule-breaking to advance accessibility and inclusive design.
fromwww.bbc.com
2 months ago

'Hospital's neglect in my son's death has ripped our hearts out'

Peter Dervin had spent all day by his son's side in Broomfield Hospital before he decided to get dinner. He pleaded with staff at the Essex facility not to leave his eldest child, Greg, alone in his absence. "They almost laughed at me and said, 'This is what we do. We're nurses and we look after patients'," Dervin recalls. Greg had been given lorazepam, an anxiety drug flagged by clinicians as leaving him prone to becoming unsteady and agitated.
UK news
Mental health
fromPsychology Today
2 months ago

The Power of Community in Huntington's Disease

A gene-positive, asymptomatic Huntington's Disease carrier hesitates to join community support due to isolation, pride, and fear, but recognizes potential benefits.
Public health
fromBoston.com
1 month ago

As some people push to make profound autism its own diagnosis, this Ayer family is raising twins with it

Creating a separate diagnosis for profound autism could improve access to services and research but may shift attention away from the broader autism spectrum.
Public health
fromSilicon Canals
2 months ago

The early dementia sign that appears 10 years before diagnosis that most people explain away - Silicon Canals

Declining financial management often precedes memory symptoms and can appear up to a decade before a dementia diagnosis.
Public health
fromwww.bbc.com
2 months ago

Families with children battling cancer to have travel costs covered

England will cover travel costs for children and young people with cancer up to age 24, funded by £10 million annually by 2027.
fromwww.bbc.com
2 months ago

London teacher leaves cancer campaigning legacy

From the moment Nathaniel Dye was diagnosed with stage four bowel cancer in 2023, he had an overwhelming desire to raise awareness of the disease. He raised more than 37,000 for Macmillan Cancer Support through challenges including walking from Land's End to John o' Groats and running the London Marathon while playing the trombone, in the hope of improving cancer screening in the capital.
Public health
fromwww.bbc.com
2 months ago

'Our daughter's cancer symptoms were dismissed because she was a child'

Isla first went to the GP in July 2022 with a lump in her breast, but she was told it was likely to be benign and caused by hormonal changes. "She was told it was hormonal - a fibroadenoma - and she would grow out of it," Isla's father Mark said. Two years later, Isla became ill and was taken to hospital, where doctors suspected she had cancer and made an urgent referral for biopsies.
Public health
Medicine
fromThe Mercury News
1 month ago

Eric Dane's official cause of death revealed

Eric Dane, 53, died from respiratory failure caused by ALS, a progressive degenerative disease he was diagnosed with in April 2025.
Medicine
fromPsychology Today
1 month ago

The Process of Being Diagnosed With a Rare Condition

Sphincter of Oddi dysfunction is a rare condition affecting digestive juice flow that causes severe abdominal pain and is often overlooked in medical diagnosis despite being treatable.
#breast-cancer
Public health
fromwww.npr.org
2 months ago

This hospice has a bold new mission: saving lives

A hospice in eastern Uganda expanded into cervical and breast cancer screening, treatment, and HPV vaccination outreach, detecting precancerous lesions and reaching tens of thousands.
Public health
fromPsychology Today
2 months ago

A Medical Treatment to Lower Your Alzheimer's Disease Risk

Vaccination against several infections reduces long-term dementia risk; vaccine hesitancy may therefore increase dementia rates.
Medicine
fromwww.theguardian.com
2 months ago

Kids with brain cancer were already in a life and death struggle. Then came Trump

Diffuse intrinsic pontine glioma (DIPG) is an almost universally fatal brainstem cancer that leaves children physically incapacitated while their minds remain intact.
Medicine
fromwww.bbc.com
2 months ago

'Just bad luck': The teenage cousins living with inoperable brain tumours

Two teenage cousins in Scotland developed inoperable brain tumours, unrelated genetically, and are living with their conditions after multiple surgeries.
Medicine
fromBusiness Matters
2 months ago

Why Early Diagnosis of Multiple Myeloma Can Save Lives

Early diagnosis of multiple myeloma significantly improves treatment outcomes and prevents irreversible organ damage, increasing survival and quality of life.
Medicine
fromBustle
2 months ago

Why Even Supportive Partners Can Struggle To Understand Migraines

Migraines are complex, multi-day neurological disorders whose invisible symptoms complicate understanding, support, and communication within intimate relationships.
Medicine
fromHarvard Gazette
2 months ago

An Alzheimer's breakthrough 10 years in the making - Harvard Gazette

Lithium is a natural brain element whose depletion contributes to Alzheimer's and lithium orotate prevented and reversed Alzheimer's pathology and memory loss in mice.
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