Finding Financial Assistance for Muscular Dystrophy

What Is Muscular Dystrophy?

Muscular dystrophy is a group of diseases within the same family that cause the deterioration of muscle mass and muscle cells, severe physical weakness, and commonly, the loss of mobility.

Although there are different types of muscular dystrophy (categorized by the different muscle groups that they affect), they share a common cause: these types of illnesses are caused by “a mutation, or flaw, in a gene that interferes with the production of proteins needed to form and maintain healthy muscle.”

Such mutations may result in cells manufacturing a defective form of a particular protein, or insufficient (or completely absent) levels of protein.

Average Cost of Muscular Dystrophy Treatment

While the range of treatments for muscular dystrophy varies, it typically includes physical therapy, medication management, assistive devices, and, in some cases, gene therapy or clinical trials for experimental treatments.

The treatment cost of muscular dystrophy can vary dramatically. In the early stages, the average annual cost to treat a muscular dystrophy patient starts at around $20,000 before insurance.

As the disease progresses, costs can reach more than $300,000, especially if respiratory function declines and a ventilator is required.

Common Out-of-Pocket Costs With Treating Muscular Dystrophy

Many muscular dystrophy-related costs may not be fully covered by insurance. Here’s just a small sample of common out-of-pocket costs:

• Health insurance premiums, deductibles, and co-payments
• Medications
• Travel expenses for rehabilitation and treatment
• Relocation or moving expenses related to the diagnosis (such as in the case of moving to be closer to a rehabilitation center or hospital for treatment)
• Temporary housing due to relocation
• Mileage, tolls, and parking fees for visits to rehabilitation center or hospital
• Specialized wheelchairs and other durable medical equipment
• Specially equipped vans and durable medical equipment
• Home modification related to the diagnosis
• Home health care services
• Physical therapy and vocational rehabilitation
• Experimental treatments
• Assistive technology

Finding Muscular Dystrophy Financial Assistance with Help Hope Live

Navigating muscular dystrophy comes with a unique set of questions and challenges that vary from case to case. When you factor in additional treatments, rehabilitation, therapy, and the need for long-term care, the financial burden can escalate rapidly.

As your trusted community-based fundraising partner, we’re here to help.

for families living with muscular dystrophy and associated expenses. Our nonprofit organization is dedicated to helping those in need to raise money for medical treatment costs.

How Fundraising for Muscular Dystrophy Works

The fundraising process with our nonprofit starts with a few simple steps:

1. Complete a short campaign request at helphopelive.org/get-started/apply
2. We will contact you if community-based fundraising is a possible option
3. You’ll be paired with a Client Services Coordinator
4. Your Coordinator will provide you with one-on-one fundraising help, including personalized materials and guidance on how to rally your community, share your story on social media, reach.