Financial Assistance for Muscular Dystrophy Patients with Help Hope Live
- 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
What is the rare disease educational support program?
In addition to assisting with registration fees, the Rare Disease Educational Support Program provides limited financial assistance to patients and caregivers for travel and lodging costs. We look forward to helping patients and families participate in a broad spectrum of rare educational programs.
How do I contact MDA for support?
Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.
Why choose MDA care center for neuromuscular care?
As neuromuscular diseases progress, MDA Care Center team members are prepared to recommend and prescribe various types of medical equipment that can increase independence and quality of life. When such equipment is needed, MDA offers assistance in locating prescribed items through referrals to community resources.
What is the MedicAlert® Assistance Program?
NORD’s MedicAlert® Assistance Program provides eligible individuals with a MedicAlert product and three years of membership.
Are there any organizations that help with muscular dystrophy?
For over 70 years, MDA has led the way as the #1 Voluntary Health Organization in the U.S. for people living with neuromuscular diseases.
How can you help someone with muscular dystrophy?
How can I help someone with muscular dystrophy improve their mobility? Assist them with range-of-motion exercises that keep joints flexible and low-impact aerobic exercises such as swimming or walking. 7 If they're unable to exercise, though, help them use braces and supports such as walkers to maintain mobility.
What are the treatment goals for a patient with muscular dystrophy?
The main goal in the treatment of Duchenne muscular dystrophy (DMD) is to maintain ambulation for as long as possible and to anticipate and manage the associated complications, such as joint contractures, scoliosis, cardiomyopathy, respiratory insufficiency, and weight gain.
What kind of medical assistance is needed for Duchenne muscular dystrophy?
Glucocorticoids, more precisely prednisone and deflazacort, are the main drug treatment for DMD. They have been used for over two decades and the benefits are well known now. They are the only medication that has been shown to increase muscular strength.
Does muscular dystrophy qualify for disability?
When muscular dystrophy takes away your ability to maintain gainful employment, it qualifies as a disability – and the Social Security Administration (SSA) recognizes certain symptoms of the disease as a cause for benefits.
Can you live a full life with muscular dystrophy?
Muscular dystrophies are not always fatal. While some types of muscular dystrophy can shorten a person's life expectancy, people with other forms of the disease live full, average-length lives.
How long do people with muscular dystrophy live?
Duchenne MD – one of the most common and severe forms, it usually affects boys in early childhood; people with the condition will usually only live into their 20s or 30s.
What are the final stages of muscular dystrophy?
The complications of progressive muscle weakness include:Trouble walking. Some people with muscular dystrophy eventually need to use a wheelchair.Trouble using arms. ... Shortening of muscles or tendons around joints (contractures). ... Breathing problems. ... Curved spine (scoliosis). ... Heart problems. ... Swallowing problems.
What is the survival rate of muscular dystrophy?
Median survival in the overall dataset was 22.0 years (95% CI 21.2, 22.4), but survival rates have increased over time, with a median survival of 28.1 years (95% CI 25.1, 30.3) in patients born after 1990. These results are consistent with other recent work.
Can you rebuild muscle with muscular dystrophy?
Summary: A potential way to treat muscular dystrophy directly targets muscle repair instead of the underlying genetic defect that usually leads to the disease, researchers say.
How does muscular dystrophy affect daily life?
However, for the most part, the progressive muscle weakness caused by muscular dystrophy can have a significant impact on a person's ability to do daily activities. Mobility may be very limited, and a person may have to rely on assistive devices like walkers or wheelchairs in order to get around.
Is there a cure coming soon for muscular dystrophy?
Although there's no cure for any form of muscular dystrophy, treatment for some forms of the disease can help extend the time a person with the disease can remain mobile and help with heart and lung muscle strength. Trials of new therapies are ongoing.
How does muscular dystrophy affect daily life?
However, for the most part, the progressive muscle weakness caused by muscular dystrophy can have a significant impact on a person's ability to do daily activities. Mobility may be very limited, and a person may have to rely on assistive devices like walkers or wheelchairs in order to get around.
How do you help a child with muscular dystrophy?
Handling the challenges of muscular dystrophyLearn about the disease. This will help you know what you can do to help your child. ... Focus on your child's strengths. ... Give your child some responsibility for his or her care. ... Be aware of possible challenges. ... Consider joining a support group. ... Be realistic.
How do you slow down muscular dystrophy?
How is muscular dystrophy managed or treated?Physical and occupational therapies strengthen and stretch muscles. ... Speech therapy helps those who have problems swallowing.Corticosteroids, such as prednisone and deflazacort, may slow disease progression.More items...•
What limitations does a person with muscular dystrophy have?
Individuals with muscular dystrophy usually exhibit contractures, a condition often associated with shortened muscles around the joints. Due to the abnormal and sometimes painful positioning of the joints, most individuals have extreme fatigue and weakness as well as speech, mobility, and fine motor limitations.
What Are the Different Kinds of Muscular Dystrophy?
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:
Types of Congenital Muscular Dystrophies
Congenital muscular dystrophies is a group of muscular dystrophy diagnoses that are typically diagnosed at or just after birth.
Other Complications from 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.
When Should You Involve a Doctor?
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.
How Much Are Medical Expenses for Muscular Dystrophy?
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.
Financial Assistance for Muscular Dystrophy Patients with Help Hope Live
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.
How Does Fundraising Work?
The fundraising process with our nonprofit starts with a few simple steps:
What does MDFF support?
MDFF supports the purchase of items like wheelchairs (and wheelchair components), hospital beds, van lifts, ramps for homes, bathroom modifications, bathroom equipment, shower chairs, and more.
What does MDFF do?
MDFF will assist with anything that promotes quality of life, independence, mobility, or safe living; However, we do not assist with the cost of clinical trials, gene therapies, research, or medicine.
What is the immediate goal of neuromuscular care?
While advancements and treatments provide hope, our immediate goal is to provide families with equipment and services to help reduce or eliminate some of the day-to-day challenges that go with living with neuromuscular diseases.
How to contact MDFF?
Fill out the financial assistance application form or call (317) 615-9140 to tell us more about yourself and how MDFF can help you.
Is there a deadline for accessibility van giveaway?
We are always accepting applications for assistance. Outside of the Accessible Van Giveaway Program, there’s no deadline or application window for financial assistance.
What is MDA for kids?
MDA stands alongside our families in our communities to assist and empower the kids and adults we serve. We care for kids and adults from day one so they get the very best treatment. And, we empower families with services and support in hometowns across America to help them thrive and stay independent, including summer camps for kids, support groups, equipment assistance and more.
How to contact MDA?
Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-8 33-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.
What is MDA in pediatrics?
Learn about MDA’s efforts to help remove barriers and empower teens and young adults, including its focus on pediatric and adult care centers providing world-class care to young adults with muscle-debilitating diseases.
What is muscular dystrophy?
The muscular dystrophies (MD) are a group of more than 30 genetic diseases characterized by progressive weakness and degeneration of the skeletal or voluntary muscles that control movement. Some forms of MD are seen in infancy or childhood, while others may not appear until middle age or later. The condition is caused by genetic mutations that interfere with the production of muscle proteins necessary to build and maintain healthy muscles. The disorders differ in terms of the distribution and extent of muscle weakness (some forms of MD also affect cardiac muscle), age of onset, rate of progression, and pattern of inheritance. Duchenne muscular dystrophy is the most common form of MD and primarily affects boys; Facioscapulohumeral MD usually begins in the teenage years and Myotonic is the most common adult form of MD. The most common types of MD are Duchenne (DMD), Becker, Myotonic, Congenital, Emery-Dreifuss, Fascioscapulohumeral, Limb-Girdle, Ocular and Oculopharyngeal.
What is the most common form of MD?
Duchenne muscular dystrophy is the most common form of MD and primarily affects boys; Facioscapulohumeral MD usually begins in the teenage years and Myotonic is the most common adult form of MD. The most common types of MD are Duchenne (DMD), Becker, Myotonic, Congenital, Emery-Dreifuss, Fascioscapulohumeral, Limb-Girdle, Ocular and Oculopharyngeal.
What is the cause of Duchenne muscular dystrophy?
Duchenne muscular dystrophy is one of nine kinds of muscular dystrophy and is caused by an absence of an important muscle-related protein called dystrophin. In people with Duchenne, muscle weakness begins at an early age, and by the teenage years affects the heart and respiratory muscles.
What is the patient assistance fund?
The Assistance Fund is an independent charitable patient assistance foundation that helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles and other health-related expenses.
Can you live with Duchenne in your 20s?
People living with Duchenne typically do not live beyond their 20s; however, with recent advances in care, survival into the 30s is becoming more common. 1. “Until now, patients and families living with Duchenne in the U.S. have not had a single approved treatment option.
How to contact MDA?
MDA’s Resource Specialists will be happy to refer you to other equipment loan resources as they are available and can be reached by phone at 1-833-ASK-MDA1 (1-833-275-6321) and by email at [email protected].
What is the MDA Care Center?
As neuromuscular diseases progress, MDA Care Center team members are prepared to recommend and prescribe various types of medical equipment that can increase independence and quality of life. When such equipment is needed, MDA offers assistance in locating prescribed items through referrals to community resources. MDA’s Resource Specialists will be happy to refer you to other equipment loan resources as they are available and can be reached by phone at 1-833-ASK-MDA1 (1-833-275-6321) and by email at [email protected].
What is NMEDA wheelchair?
NMEDA: NMEDA provides adaptive transportation solutions for you, your family or caregivers. Through the use of mobility equipment, NMEDA Dealer Members provide independence and the ability to get behind the wheel. With equipment installed by a dealer who participates in NMEDA’s Quality Assurance Program (QAP™), a wheelchair accessible or modified van, truck or car can provide the assurance you need to feel confident and secure on the road once more.
What is the International Society of Wheelchair Professionals?
International Society of Wheelchair Professionals (ISWP): Created by the RERC on Wheeled Mobility at the University of Pittsburgh, this site contains tons of information on purchasing and using a wheelchair.
What is the Rare Disease Educational Support Program?
This program provides reimbursement for registration costs for rare disease-specific educational offerings, as well as programs that support patients’ health and well-being, such as workshops, nutrition classes and conferences. In addition to assisting with registration fees, the Rare Disease Educational Support Program provides limited financial assistance to patients and caregivers for travel and lodging costs.
Who must have a confirmed rare disease diagnosis?
The individual and/or immediate family within the household must have a confirmed rare disease diagnosis.
What is the NORD program?
Since 1987, NORD has provided assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.
Are you eligible?
Eligibility criteria can vary by program but most of NORD’s patient assistance programs require the following:
