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.

Does Insurance Cover the Cost of Muscular Dystrophy Treatments?

The level of coverage for your muscular dystrophy treatment can vary depending on your insurance plan and provider.

Common Out-Of-Pocket Costs With Treating Muscular Dystrophy

• 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 rallying your community, sharing your story on social media, reaching out to the press, planning in-person or virtual fundraising events, and much more

How Is Help Hope Live Different from GoFundMe?

Help Hope Live differs from GoFundMe by:

• Verifying your medical need for complete donor confidence
• Enabling donations that are tax deductible
• Providing one-on-one fundraising help
• Managing all funds raised to protect your state-based benefits (funds raised are not considered personal income/assets to you)
• Paying bills directly, allowing you to focus on treatment and recovery

We are a nonprofit with more than four decades of fundraising experience and a 4-star Charity Navigator rating.

How Does Fundraising Work?

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

Does Community-Based Fundraising Work?

Here are a few Help Hope Live fundraising success stories:

“WE DID IT EVERYONE!! This is a one in a lifetime type of gift.”

Danny Stern has been using a wheelchair since he was ten years old as he experiences the progressive symptoms of muscular dystrophy. He earned his doctorate, passed the Bar, and secured employment as an associate attorney. When his accessible van became unreliable, Danny turned to Help Hope Live to fund a new van. He surpassed his $35,000 fundraising goal.

“Her motto for life is NEVER GIVE UP.”

Since 2009, the family of Scarlett Rose Landefeld has turned to Help Hope Live for secure, trusted, and experienced medical fundraising assistance to help with the costs associated with Scarlett’s spinal muscular atrophy (SMA) diagnosis. Scarlett has beat the odds since her second birthday, communicating with her eyes and engaging as fully as possible in the world around her. Fundraising ensures Scarlett’s community can rally to provide help, hope, and critical resources.

"It takes a village…Team Diane is here to support her."

Musician and teacher Diane Ellis survived a stroke during a jazz performance. “Team Diane” emerged to provide hope at a time of overwhelming need through a Help Hope Live medical fundraising campaign. With over $20,000 raised so far, fundraising helps Diane cover expenses including medical costs, pain management expenses, and ongoing therapy.