I recently volunteered to participate in the Precision Medicine Program (PMP) of the ALS Therapy Development Institute (ALS TDI). I chose them because all of their funds go toward research, I like doing my part to help support the ALS community, and it allows me to participate…

Everyone suffers from stress from time to time but when you have a chronic disease, stress not only adds to your everyday burden but can often exacerbate the symptoms of your condition. While we can’t avoid stress altogether, there are ways that we help ourselves relax more and not let things…

The Montreal Neurological Institute of McGill University and Thermo Fisher Scientific have recently partnered to accelerate the understanding of neurological disease by focusing on about 30 proteins associated with amyotrophic lateral sclerosis (ALS) and other brain diseases. The collaboration is part of…

At a time of unprecedented polarization in Congress, two U.S. lawmakers — one Republican, one Democrat — are stressing the urgency of working across the aisle to help the estimated 30 million Americans with rare diseases. Rep. Leonard Lance (R-New Jersey) and Sen. Amy Klobuchar (D-Minnesota) spoke to more…

One of the most frustrating symptoms of living with a chronic illness is brain fog. There are medications to treat many symptoms of chronic diseases, but sadly there isn’t yet a pill that takes away brain fog. However, there are ways to deal with it so patients can minimize its effects and…

Retrophin and the U.S. subsidiary of Britain’s Horizon Pharma will each donate $3 million over a six-year period to the Rare Disease Institute (RDI) at Children’s National Health System in Washington, D.C., helping it to strengthen care available and expand as a “center of excellence” for rare…

Following her husband’s frustration at not being able to do up the buttons on his formal work shirts, Maura Horton came up with a simple and practical solution: magnetic buttons. MORE: Seven facts about amyotrophic lateral sclerosis you might find interesting  According to a report on Fox News, Horton’s husband Don…

In recognition of Rare Disease Day 2018, Bionews Services — which publishes this website — will attend and report on three relevant conferences in the U.S. dealing with policies and programs of importance to patients and their families. The three are among 50 events in 32 states…

Speech-language pathologists (SLPs) or speech-language therapists (SLTs) do much more than help people with speech problems such as stuttering or mispronouncing words. For children and adults with neuromuscular disorders like spinal muscular atrophy (SMA), muscular dystrophy (MD) and amyotrophic lateral…

What do we have in common with an astronaut who is trying to survive while stranded on a hostile planet? Answer: We share the ability to tap into our resourcefulness, resiliency, and optimism. Perhaps you had a different answer to my question, especially if you have ALS or…