Amyotrophic Lateral Sclerosis Insights

Specialty pharmacies: a guide for ALS patients & carers

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Specialty pharmacies: a guide for ALS patients & carers

Exciting breakthroughs in rare disease treatments mean more patients are gaining access to cutting-edge therapies - and specialty pharmacies are playing a crucial role in delivering these medications with expert support. But what exactly do they do, and when do they come into play?

AllMyHealth’s latest guide breaks it all down - exploring how specialty pharmacies work, their expanding role in patient care, and how individuals can engage with them. Plus, we spotlight some specialty pharmacies that cater to ALS.

Available in both text and audio formats - dive in today and share with your community!

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The report is available for free online on the AllMyHealth website.

www.allmyhealth.io/reports

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Latest Research

A recent study confirmed that individuals with amyotrophic lateral sclerosis (ALS) experience sleep disturbances, a symptom previously suggested but not confirmed. The research, led by Incorvaia (2025), also identified two hormone therapies that could potentially address this issue.

The therapies were tested on mouse models of ALS, and the results showed that these treatments restored normal sleep patterns in the affected mice. This finding is significant as it opens up new avenues for improving the quality of life for those with ALS by potentially treating one of its symptomatic aspects. The study's implications suggest that hormone therapy could be a viable option to alleviate sleep disruption in ALS patients.

Community News

Les Turner ALS FoundationLes Turner ALS FoundationJan 29, 2025

We regret to announce that this week's ALS Learning Series webinar on Participation in the National ALS Registry has been cancelled.

We have been notified that, by order of the new presidential administration, the Department of Health and Human Services has halted communications and public appearances that "are not directly related to emergencies or critical to preserving health." As such, representatives from the Centers for Disease Control will not be available for our previously planned ALS Learning Series webinar on Participation in the National ALS Registry.

Participation in the National ALS Registry is a vital means of advancing our understanding of ALS, its causes, and how to fight it. People living with ALS have no time to waste. We hope to reschedule this webinar as soon as possible and will notify you when we are able to.

Les Turner ALS Foundation Post
ALSAssociationALSAssociationFeb 02, 2025

In most people’s journey with ALS, they will be confronted with the decision of using a feeding tube to help maintain proper nutrition and enhance their quality of life. As part of the ALS care planning process, people with ALS should discuss the various options with their multidisciplinary care team, weigh the pros and cons, and understand how their decision may impact their overall health. Learn more about nutrition and ALS: https://www.als.org/blog/feeding-tubes-10-things-know

#FeedingTubeAwarenessWeek

ALSAssociationALSAssociationFeb 05, 2025

New research shows Qalsody has the potential to not only stabilize SOD1-ALS, but also help some people regain strength and function -- changing the way we think about the future of ALS treatment.

ALSAssociation Post

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