Last month, I read a blog post from the ALS Association that made me sit up and pay attention. It told the story of a woman with ALS-related voice issues who learned specific vocal techniques normally utilized by actors to extend her ability to speak without assistive…
Nuedexta is an oral medication approved by U.S. Food and Drug Administration (FDA) to treat pseudobulbar affect (PBA), a condition characterized by sudden and unpredictable episodes of crying or laughing seen in people with amyotrophic lateral sclerosis (ALS) and other neurological conditions. How Nuedexta works PBA occurs when certain areas…
This week marks the launch of the “7,000 Mile Rare Movement,” a nationwide effort to raise money for research into the 7,000 known rare diseases that afflict at least 30 million Americans. The campaign kicks off Feb. 1 and culminates with Rare Disease Day on Feb. 28. Organized by…
Quality caregiving and care-accepting depend on effective communication between parties. It’s a delicate balancing act, especially when the caregiver is a spouse or family member. With traditional roles reversed, misunderstandings can happen and feelings easily get bruised. Giving care and accepting it is challenging enough without adding…
Arizona State University will soon launch a new biomanufacturing platform to grow human neurons in vitro to develop and test new therapies for neurodegenerative diseases, including amyotrophic lateral sclerosis, Alzheimer’s disease, and Parkinson’s disease. The effort includes the development of several types of neurons on a large scale to test…
An international team has learned how the body activates a protein responsible for limiting muscle growth, a finding that could lead to therapies to improve ALS patients’ muscle function. The protein, called GDF8 or myostatin, determines both the number of muscle fibers the body produces and the fibers’ size. Researchers’…
When discussing potential Radicava (edaravone) treatment with amyotrophic lateral sclerosis (ALS) patients, physicians need to take great care in presenting facts in an ethical and scientifically sound manner, warn two researchers who believe that mainstream reports of the treatment may be misleading. The duo — Crystal Yeo, MD, PhD,…
Managing a chronic illness can be difficult. There are many different medications to take (often at different times), appointments to remember, symptoms to keep track of, and lots of information to absorb. Thankfully, living in a digital age means that there are numerous mobile apps that can help you manage your chronic…
Among the many challenges I experienced during my early months with ALS was its effect on my perception of time. Before ALS, I pretty much meandered through life in full confidence that many more years lie ahead of me. But with the onset of ALS, all that changed.
A dissolving tablet version of riluzole called BHV-0223 has shown positive bioequivalence when compared to the oral form of the therapy, Rilutek, developer Biohaven Pharmaceuticals announced. The dissolving tablet, placed under the tongue, is easier to administrate to patients with amyotrophic lateral sclerosis (ALS) who have trouble swallowing. BHV-0223 also was found…
