Month: February 2022

February 28, 2022February 28, 2022

Don’t Fall for Fake Alzheimer’s Remedies

Alzheimer’s News Today Columns, COVID-19 Columns

Maybe you’ve noticed: There’s never a situation so dire that someone can’t make it worse by preying on desperate people. Think about it. The COVID-19 pandemic, the 9/11 attacks in ... Read more

February 28, 2022June 15, 2022

Don’t Fall for Fake Alzheimer’s Remedies

Alzheimer’s News Today Columns, COVID-19 Columns

Maybe you’ve noticed: There’s never a situation so dire that someone can’t make it worse by preying on desperate people. Think about it. The COVID-19 pandemic, the 9/11 attacks in ... Read more

February 28, 2022February 28, 2022

My New Diagnosis Tightens the Bond I Have With My Husband

Hemophilia News Today Columns

I recently started seeing a psychiatrist again to confirm the state of my mental health. Though I haven’t been experiencing any serious symptoms lately, I thought it might be good ... Read more

February 28, 2022February 28, 2022

FDA Rejects Filsuvez Gel for Treating Skin Wounds in JEB, DEB

Epidermolysis Bullosa News

The U.S. Food and Drug Administration (FDA) has rejected an application seeking approval of Filsuvez (Oleogel-S10) for treating skin wounds in people with junctional (JEB) and dystrophic epidermolysis bullosa (DEB). ... Read more

February 28, 2022March 1, 2022

Fosgonimeton Shows Safety in Early Trial, Phase 3 Study Enrolling in US

Alzheimer's News Today

Fosgonimeton, an experimental therapy Athira Pharma is developing to treat Alzheimer’s disease, was well-tolerated overall in a Phase 1 clinical trial that included Alzheimer’s patients as well as healthy volunteers. “These ... Read more

February 28, 2022February 28, 2022

#ACTRIMS2022 – Mavenclad Best at Reducing Relapses: Real-world Data

Multiple Sclerosis News Today

People with multiple sclerosis (MS) who are treated with Mavenclad (cladribine) are less likely to experience a disease relapse than those who are treated with Gilenya (fingolimod), Tecfidera (dimethyl fumarate), ... Read more

February 28, 2022February 28, 2022

An Invitation to Uplift the Rarer Than Rare

SMA News Today Columns

I always knew I was rare. From the motorized wheelchair to the feeding tube, there’s no mistaking me for normal. No matter how hard I try to blend in, I ... Read more

February 28, 2022February 28, 2022

Duchenne MD Helps Me Develop Close Relationships

Muscular Dystrophy News Columns

Living with Duchenne muscular dystrophy has plenty of downsides, such as having to use a wheelchair and a BiPAP machine, dealing with fatigue, and wearing night splints, among other things. ... Read more

February 28, 2022February 28, 2022

How Can Hospitals Better Serve Rare Disease Communities?

COVID-19 Columns, Myasthenia Gravis News Columns

“It’s just anxiety.” “It’s just stress or PTSD.” “You just need more rest.” For many of us in the rare disease community, these comments aren’t uncommon. As someone with seronegative ... Read more

February 28, 2022February 28, 2022

On Rare Disease Day, Our Communities Unite as One

Huntington’s Disease News Columns

Whenever I share that my wife and daughter are both gene-positive for Huntington’s disease (HD), I usually have to explain what the terminal illness is — “Imagine combining Alzheimer’s, Parkinson’s, ... Read more

February 28, 2022February 28, 2022

Our Daughter Is the Rarest of the Rare

Lambert-Eaton News Columns

From the start, our daughter’s life was harder than most. When we adopted Grace when she was just 13 months old, she was among the roughly 81,000 children adopted by ... Read more

February 28, 2022February 28, 2022

Supporters Set to ‘Light the Night’ for Amyloidosis Awareness Month

FAP News Today

To mark Amyloidosis Awareness Month, observed each March, the Amyloidosis Foundation is reprising its “Light the Night for Amyloidosis” campaign. The month-long initiative is aimed at heightening awareness about amyloidosis, ... Read more

February 28, 2022February 28, 2022

Stories Form My Identity, and I Crave My Truest Identity

Cystic Fibrosis News Today Columns

There’s a person I really like. (I’m her boyfriend, it’s nice.) And when I really like someone, I drop my defenses. We were discussing the building blocks of our identity, ... Read more

February 28, 2022February 28, 2022

In Praise of Essential Workers

aHUS News

We have been hearing a lot lately about essential workers. There is much praise for the front-line heroes who protect and save lives. You know the ones: the doctors, nurses, ... Read more

February 28, 2022February 28, 2022

My Support Network Is More Than an Audience During a Crisis

Sickle Cell Disease News Columns

I’ve often considered myself unlucky to carry the burden of sickle cell disease, which sometimes seems insurmountable. The journey can be isolating. I have aches and pains that nobody can see ... Read more