Telemedicine for FSHD is an idea whose time has come! If people with FSHD are rare, doctors who understand FSHD are rarer still. Patients who don’t have the time or resources to travel long distances may never have the opportunity to receive state-of-the art medical care for their condition. That is about to change. One… Read More »
Telemedicine for FSHD
Genetic testing for FSHD—a new frontier
There are exciting new developments in FSHD genetic testing. A new genetic test for FSHD is now being offered by PerkinElmer Genomics, a global company known for scientific and medical testing services. Other companies and groups are likely to follow suit. This is the first major innovation in FSHD genetic testing in nearly three decades… Read More »
FSHD and COVID-19
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 »
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 »