As communities everywhere take steps to reduce transmission of COVID-19, we would like to share some information provided by our panel of medical advisors. For most individuals with FSHD, the risk of serious illness from COVID-19 infection is the same as the general population. The CDC and MDA websites provide detailed information about who is… Read More »
FSHD and COVID-19
FAQs about genetic testing for FSHD
Julie Cohen, MSc, genetic counselor Julie Cohen, ScM, genetic counselor in the Center for Genetic Muscle Disorders at the Kennedy Krieger Institute in Baltimore, Maryland, answers some commonly asked questions. Q. What is the genetic cause of FSHD? Let me begin by saying that the genetics of FSHD is quite complex! There are two types… Read More »
Tax advantages from ABLE accounts
You may not even know you are eligible for these By Chris Stenmon, CPA, Braintree, Massachusetts Some consider this the most significant federal legislation for disabled individuals since President George H. W. Bush signed the Americans with Disabilities Act (ADA) into law in 1990. Called the Stephen Beck, Jr. Achieving a Better Life Experience (ABLE)… Read More »
CBD and medical marijuana [VIDEO]
Here are the slides and the recording from our webinar with Jennifer Bernstein on CBD and medical marijuana. With the spread of legalized medical marijuana and the passage of the 2018 Farm Bill that made CBD legal in all 50 states, it’s a bit of the Wild West out there for individuals seeking relief from… Read More »
NAD+ supplementation may help aging muscle
Could it be helpful for FSHD? BY AMANDA HILL, HIGHLANDS RANCH, COLORADO In the current absence of a treatment for FSHD, many patients experiment with a variety of lifestyle or diet changes, supplements, naturopathic medicine, or other types of treatments to help alleviate and cope with disease symptoms. In recent years, several laboratory studies have… Read More »