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Our nonprofit can find financial help for those struggling with muscular dystrophy through fundraising.
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.”
Within this group of illnesses, some types reveal themselves during childhood and others are typically not diagnosed until adulthood. The different kinds of muscular dystrophy include:
Congenital muscular dystrophies is a group of muscular dystrophy diagnoses that are typically diagnosed at or just after birth. These variations are defined by the wide variety of symptoms that they cause, including issues like joint stiffness or looseness, scoliosis, the degradation of respiratory function, intellectual disabilities, learning problems, eye issues or seizures. Some of the most common are:
When children are born with severe forms of muscular dystrophy, they may never gain the ability to walk or attain other typical developmental milestones. When the disease occurs in older children and adults, they may lose their ability to walk. There is no cure for muscular dystrophy.
Depending on the type of muscular dystrophy they are experiencing, children or adults could experience the degeneration of respiratory function, weakness with the muscles that help them swallow, intellectual disabilities, learning disabilities, eye defects, or seizures. Other issues may include the shortening of skeletal muscles or tendons around joints, scoliosis, and heart problems.
Muscular dystrophy is caused by a deformity located on the X chromosome. Experts agree thar muscular dystrophy appears more frequently in males than females because they only have one X chromosome. Females possess two X chromosomes, and when the mutation is detected on one of the chromosomes, they do not present symptoms because their healthy dystrophin gene takes charge and their unhealthy X chromosome shuts down. However, they will continue to be carriers of the gene and could pass it on during reproduction. For women who may be a female carrier, doctors recommend genetic testing before conception.
If you notice a dramatic lack of muscle tone development in an infant, or if your infant or toddler experiences delays in reaching motor milestones like rolling over, sitting up, or walking, or fails to meet them at all, it’s time to have a discussion with your pediatrician.
The onset of variations of muscular dystrophy in adults commonly present with strong, rapidly developing signs of skeletal muscle weakness, including increased clumsiness or falling.
The treatment cost for the wide range of muscular dystrophy types 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 continues to progress, costs can reach more than $300,000, especially if reparatory function declines and a ventilator is required.
For families facing muscular dystrophy symptoms in a child or adult, Help Hope Live can assist with trusted fundraising to help families access medical assistance funds. Through community-based fundraising, our nonprofit organization is dedicated to helping those in need to raise funds for medical treatment costs associated with treatment for muscular dystrophy.
Help Hope Live differs from GoFundMe by:
We are a nonprofit with more than four decades of fundraising experience and a 4-star Charity Navigator rating.
The fundraising process with our nonprofit starts with a few simple steps:
Here are a few Help Hope Live fundraising success stories:
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.
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.
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.
If you choose to fundraise with our nonprofit, here’s how the process will look:
1. APPLY for assistance
2. YOU’LL BE PAIRED with a Client Services Coordinator
3. YOUR COORDINATOR will provide you with one-on-one fundraising help, including personalized fundraising materials and guidance on how to rally your community, share your story on social media, reach out to the press, plan in-person or virtual fundraising events, and more.
Need Other Financial Help Options?
For alternatives to fundraising, you can find information on a variety of cancer financial assistance options. Please view our Illness Resource Directory for insight into sources of direct financial aid, support groups, and other resources for cancer patients and their families.