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…
As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the outbreak — are particularly terrified of this pandemic. That fear is evident in an online survey conducted by the National…
With my gym closed, I’ve been getting my daily exercise by cross-country skiing. A calm happiness washes over me at about the 2-kilometer mark, after my heart rate is up and endorphins flood my brain. I take in the beauty of the woods. Soft snow, the vestige of winter,…
Because I have ALS, I need to minimize the risk of getting the coronavirus. So, I’m doing my best to follow the COVID-19 social distancing guidelines. And I appreciate the efforts of everyone who’s doing the same. Certainly wearing a mask and gloves, wiping down surfaces, and keeping…
A team at the Rowan University School of Osteopathic Medicine has received a $1.6 million grant to study the role of the SOD1 protein — whose gene is often mutated in amyotrophic lateral sclerosis (ALS) — in the communication between the gut and the brain. The National Institutes…
