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Foster Care, Adoption, and Surrogacy Considerations for Parents with Neuromuscular Diseases
For many people living with neuromuscular diseases — or any disability — the desire to become a parent is steady and deeply felt, even when the path looks different from what others might expect. Pregnancy may be one option, but it is far from the only one. Foster care, adoption (domestic or international), and surrogacy…
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Finding the Funny: Fiona Cauley Uses Comedy to Raise Disability Awareness
Fiona Cauley, 29, brings attention to Friedreich ataxia (FRDA or FA) every time she sits on a stage. A comedian living with FRDA, Fiona candidly shares her observations about living with a disability. Before her diagnosis, Fiona played volleyball and soccer. When her first symptoms appeared in high school — loss of balance and slurred…
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MDA’s DME Grant Program Helps Get Essential Equipment to Live Well
Access to durable medical equipment (DME) is vital for safety, mobility, and greater independence. For Chuck Vrasich, of Illinois, a light, portable lift lets him move around his home without worrying about falls. For Jo Ann S. Rincon, of Texas, a toilet lift provides the support she needs to use the bathroom independently. Both of…
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Considerations and Tips to Plan for Pregnancy with a Neuromuscular Disease
Like many expectant moms, Savannah Jordan of California experienced a mix of excitement, nerves, and uncertainty during her first pregnancy, in 2018. But living with limb-girdle muscular dystrophy (LGMD) added another layer of questions. Jessery Picard Would her neuromuscular disease affect the pregnancy? Would pregnancy worsen her symptoms? Should she anticipate complications? What would the…
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Progress Now: Drug Approvals and Clinical Trial Updates
Amyotrophic lateral sclerosis (ALS) Phase 3 Clinical Trial: Enrolling PREVAiLS is a phase 3 trial testing an investigational therapy called pridopidine in adults with early, rapidly progressing ALS. The main goal is to evaluate whether pridopidine can slow the disease progression. Inclusion criteria include: Definite or probable ALS diagnosis Between 18 and 80 years old…
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Second-Act Career: Sharon Townsend Finds Purpose in a New Role
Sharon Townsend spent the first chapter of her adult life focused on creating a loving, comfortable, and happy home for her three children. Now, the 63-year-old has found a new purpose in providing the same warmth and hospitality as a Front Desk Agent at the Hampton Inn. Getting a diagnosis Sharon Townsend Sharon spent the…
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Understanding ADSS1 or ADSSL1 Myopathy
ADSS1 myopathy (formerly known as ADSSL1 myopathy) is a very rare, genetic neuromuscular disease that causes progressive muscle weakness beginning in childhood. It’s a slowly progressive condition that affects skeletal muscles, breathing muscles, swallowing, and, sometimes, the heart. The number of reported cases worldwide ranges from 100 to 200, but many more are believed to…
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Accessible Dental Care: Why You Should Go to the Dentist and How to Prepare for a Visit
Michael Chan, DDS A trip to the dentist can feel overwhelming for many people living with neuromuscular diseases. Muscle weakness, fatigue, swallowing challenges, contractures, and mobility needs can all affect daily oral hygiene and, ultimately, dental visits. But oral health is about much more than having a bright smile — it plays an essential role…
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Looking for community? Join us in the muscular dystrophy forums.
Having a rare disease is not an easy life. I have limb-girdle muscular dystrophy, so in addition to the physical decline of my body, I also need to be hyperaware of my mental health. I don’t think humans were hardwired to adjust to life on their own with a condition like muscular dystrophy. So what’s…
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Critical ALS Legislation You Need to Know About
Critical ALS Legislation You Need to Know About As we near the end of ALS Awareness Month, the work is just beginning to get critical legislation for those with ALS passed by Congress. This year, MDA is prioritizing and advocating for three major ALS congressional initiatives in service of those living with ALS. First, we…
