Mitsubishi Tanabe Pharma America (MTPA) has set up a support program for adults living with amyotrophic lateral sclerosis (ALS) and wanting to learn more about this disease and Radicava (edaravone), an intravenous ALS treatment the company markets in the U.S. Called JourneyMate, the program connects ALS patients…
A large part of successfully living with ALS is to face each challenge with a positive mindset and find workable solutions so I can continue to move forward with my life. Lately, a 4-by-6-inch piece of cloth — yes, a face mask — is putting me to the test. What’s…
European authorities must step up efforts to screen babies for a multitude of genetic disorders, a panel of experts suggested during a May 14-15 online medical conference. The session was part of the 10th European Conference on Rare Diseases & Orphan Products (ECRD2020) — which was to have occurred…
A few years before my husband, Todd, was diagnosed with ALS, he baked a cake for a church fundraiser with one hand while our infant daughter slept on her stomach across his other forearm, her head cradled in his hand. It was impressive enough that he could make the traditional…
Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together online during the COVID-19 pandemic. The 10th European Conference on Rare Diseases & Orphan Products (ECRD2020) — which was set for May 14–15 in…
Here’s a fun challenge. In the spirit of celebrating ALS Awareness Month, I invite you to play my A-L-S word game. It’s a simple game I created to help me cope with the stress and anxiety of being newly diagnosed with ALS. It goes along with the strategies…
As I waited for the postmaster to bring my package to the counter, I tried to think of what I had ordered. Nothing came to mind. He set the brown box on the counter and said, “Here you go,” through his fabric mask. The package, measuring about 12 inches by…
ProMIS Neurosciences announced its program for amyotrophic lateral sclerosis (ALS) is advancing, and scientists were able to generate a specific type of antibody against toxic TDP-43 protein clumps — a hallmark of this disease — that continuously damage nerve cells. These antibodies, called intrabodies because they…
The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…
Did you know that rollators were invented nearly 40 years ago? A Swedish woman with polio added four wheels to her walker, and the idea was an instant success. Most of us who use a rollator don’t really care about its history. We’re just happy they exist to help…
