How do you know if ALS is familial?

Amyotrophic lateral sclerosis (ALS) is considered familial if it affects more than one person in the same biological family. This typically occurs in about 10% of ALS cases. If a person living with ALS has no known family history of the disease, it is considered sporadic ALS , meaning it occurs randomly.

What age does familial ALS start?

For most people with familial amyotrophic lateral sclerosis (ALS), symptoms first appear between the ages of 40 and 60. However, all patients have a different experience with ALS and there can be substantial variation in age of onset from person to person.

How long can you live with familial ALS?

Disease progression for someone with familial amyotrophic lateral sclerosis (ALS) can vary considerably, depending in large part on when symptoms first appear and the specific ALS-related mutation the individual has. Life expectancy is extremely variable from person to person, but most people with familial ALS do not survive beyond two years after the initial onset of symptoms.

Is there a cure for familial ALS?

There is no cure for any form of amyotrophic lateral sclerosis (ALS). However, there are available treatments that can help to slow ALS progression and extend survival, as well as therapies that can make the disease's symptoms more manageable.

How do you treat familial ALS?

Treatment of amyotrophic lateral sclerosis (ALS) is basically identical for both familial and sporadic forms. Generally, patients receive medications that aim to slow disease progression, alongside other therapies that work to ease symptoms and improve comfort. There are some investigational therapies that target specific disease-causing mutations in some forms of familial ALS, but these are still in experimental stages.

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Familial ALS

Amyotrophic lateral sclerosis (ALS), also called Lou Gehrig's disease, is a progressive neurodegenerative disorder that runs in families in about 10% of cases. When more than one person in the same biological family is affected by the disease, it is referred to as familial ALS.

Sporadic ALS

About 90% of cases of amyotrophic lateral sclerosis (ALS), the progressive neurological disorder also known as Lou Gehrig's disease, are characterized as sporadic ALS, meaning they occur spontaneously. The term sporadic in ALS means without a clear pattern, and the individuals with these cases have no known family history of the disease.

March 17, 2023 News by Steve Bryson, PhD

Anew’s ALS gene therapy shows promise in mice

Anew Medical‘s targeted gene therapy candidate, ANEW-202, eased multiple mechanisms associated with amyotrophic lateral sclerosis (ALS), leading to improved muscle function and survival in a mouse model of the disease. The gene therapy, licensed on an exclusive worldwide basis from the Autonomous University of Barcelona, in Spain, is…

March 16, 2023 Columns by Kristin Neva

Finding beauty in the little things while living with ALS

My husband, Todd, and I enjoy watching chickadees flit from a feeder that hangs from a mountain ash tree behind our house to one of the branches, where they crack the shells and eat the sunflower seeds. “Let Comet out,” Todd told me one morning. “There’s a squirrel in the…

March 16, 2023 News by Steve Bryson, PhD

QurAlis secures $88M to advance ALS therapies

QurAlis has secured $88 million to advance the clinical development of QRL-101 and QRL-201, its lead candidates for amyotrophic lateral sclerosis (ALS). The new series B financing, a second round of funding after the company met certain research milestones, brings the total investment to $143.5 million. The proceeds will…

March 14, 2023 News by Mary Chapman

MDA’s Night of Hope in Atlanta to honor late ALS patient and family

The Muscular Dystrophy Association (MDA) is hosting its 16th annual MDA Atlanta Night of Hope Gala: A Benefit for ALS Research to raise funds for amyotrophic lateral sclerosis (ALS) research and care. The event will be held 6-11 p.m. EDT March 25 at the InterContinental Buckhead Atlanta. It…

March 13, 2023 News by Mary Chapman

ALS researcher Merit Cudkowicz to receive MDA legacy award

Renowned neurologist and amyotrophic lateral sclerosis (ALS) investigator Merit Cudkowicz, MD, of Massachusetts General Hospital has been named this year’s recipient of the Muscular Dystrophy Association (MDA) Legacy Award for Achievement in Clinical Research. The award, which recognizes outstanding accomplishments in neuromuscular research, will be presented March 20…

March 10, 2023 News by Lindsey Shapiro, PhD

CNM-Au8 found to delay clinical worsening in ALS HEALEY trial

Treatment with CNM-Au8 significantly delayed clinical worsening in people with amyotrophic lateral sclerosis (ALS), according to new exploratory analyses from the therapy’s arm of the HEALEY ALS platform trial. The experimental therapy, from Clene Nanomedicine, had previously been found to reduce the risk of death by more…

March 9, 2023 Columns by Kristin Neva

Supporting those new to ALS with lessons from my experience

On the ski trail the other afternoon, I was feeling discouraged. I hadn’t slept well the previous couple of nights and had a low-grade headache, but I willed myself to keep going. Exercise is good for my body, and being in nature usually soothes my mind. They’re two of…

Types of ALS

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that can be classified into different types based on factors like genetics, a patient's family history, and the disorder's early symptoms. Across all types, ALS is marked by the loss of motor neurons...