- DMD has a 100% fatality rate
- Most DMD kids die in their late teens or early twenties
- Most children with DMD are in a wheelchair, most between 10-12 years old
- DMD is associated with respiratory failure, heart failure, and debilitating orthopedic complications
- Families all over the world are suffering from the effects of Duchenne, the most severe form of muscular dystrophy
- Approximately one in 3,500 boys is born with DMD
- An estimated 15,000-20,000 children in America are afflicted
- DMD affects boys of every ethnicity and geographic location
- One third of all DMD cases are the result of random in utero mutation, with no warning before the affected baby is born
- Although much is known about the cause and effects DMD, the current treatment options are extremely limited. Doctors recommend steroids and daily stretching.
- Steroids have been known to delay the progression of the disease
- Steroids are often associated with serious side effects
- Much is still unknown about how steroids work
- Despite daily stretching, many DMD kids need orthopedic braces and corrective surgery to combat the debilitating muscle contractures
- Because there is no acceptable universal treatment for Duchenne, many families turn to alternative therapies (nutritional supplements, vitamins, acupuncture)
- DMD is the most common of the more then 20 different Muscular Dystrophies. Duchenne Muscular Dystrophy is a genetic muscle disorder that afflicts approximately 15,000 boys in the United Statesalone. Children with DMD cannot produce dystrophin, a protein necessary for muscle strength and function. As a result, every muscle in the body deteriorates. The disease has a 100% death rate and has, at this point, no cure. DMD is the most common fatal genetic disorder to effect children around the world.
- Symptoms usually appear in male children before age six and may be visible in early infancy. Progressive muscle weakness of the legs and pelvis associated with a loss of muscle mass is observed first; eventually this weakness spreads to the arms, neck, and other areas. Early signs may include enlargement of calf muscles, low endurance, and difficulties in standing unaided or inability to ascend staircases.
- As the condition progresses, muscle tissue experiences wasting and is eventually replaced by fat and fibrotic tissue. By age 10, braces may be required to aide in walking but most patients are wheelchair dependent by age 12. Later symptoms may include abnormal bone development that lead to skeletal deformities, including curvature of the spine. Due to progressive deterioration of muscle, loss of movement occurs eventually leading to paralysis. Intellectual impairment may or may not be present but if present, does not progressively worsen as the child ages. The average life expectancy for patients afflicted with DMD varies from early teens to age mid 30s.
- However, there are some signs of hope. Recent stem-cell research is showing promising vectors that may replace damaged muscle tissue. Treatment is generally aimed at control of symptoms to maximize the quality of life. The cure is getting closer, but they still need more effort towards the research end of things…and that equates to having more money. The mission of the Romito Foundation is to improve the treatment and quality of life for all persons living with DMD. We will aid current and future medical research and support established non-profit organizations with like interests.
- Directly provide funding to research for developing treatment and cures for DMD.
- Conducting charitable events to raise public awareness as well as raising funds for our goals.
- To partner with other organizations pursuing like goals.
- To identify the best possible avenues to improve quality of life for people with DMD and augment funding in those areas.
For more information on DMD please visit www.parentprojectmd.org