A rock-painting contest in Las Vegas. A fashion show in New York. A 7,000-meter race around the Washington Monument that’ll coincide with a similar #Racefor7 event in Bengaluru and Mumbai, India. From Athens to Atlanta, from San Diego to Sydney, people across the globe will mark World Rare Disease…
Last week, I had the opportunity to attend a fun, social, gala event. Even though the occasion was filled with presentations and entertaining activities, my best take-home memory came from the special moment I shared with another attendee. It happened during a short lull in the program. Presentations…
Amyotrophic lateral sclerosis (ALS) is commonly referred to as Lou Gehrig’s disease. But who was Lou Gehrig? Henry Louis Gehrig was born in New York on June 19, 1903, at a time when very few people were aware of ALS, the progressive and neurodegenerative disease. Gehrig grew up to…
Part two of a series. Read part one here. To help you get started with creating your perfect treatment plan for depression, I will share my experience with two types of therapy that have been especially helpful as I learn to cope with living with ALS. I…
David Curtis Glebe, a retired 64-year-old public prosecutor now living in Millsboro, Delaware, knows he’s lucky to be alive. In mid-2013, while in Arizona, Glebe was diagnosed with pancreatic neuroendocrine cancer (PNET) — the same disease that killed Apple’s founder and CEO Steve Jobs. After three years of progress…
Researchers in Germany studying standards of care in amyotrophic lateral sclerosis (ALS) patients found a high unmet need for assistive technology devices. The cohort study, “Provision of assistive technology devices among people with ALS in Germany: a platform-case management approach,” was published in the journal Amyotrophic Lateral Sclerosis and…
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…
