Mission: Raise funds to promote and support research to find a cure for rare diseases (specifically: duchenne muscular dystrophy). Provide assistance to those who suffer from duchenne muscular dystrophy in the form of services, equipments and funds.
Programs: Provided monies toward scientific research via harrison's fund and parent project md. These are a colalition of organizations that pull money to fund research. A researcher can go to the organization's website to apply for funding. Monies fund clinical trials, development of new drugs or funding a critical phase. The research can benefit any/all affected by duchenne muscular dystrophy - approx 30,000 people in the usa and 300,000 worldwide. Goal is to cure disease, slow progression of disease, and improve standards of care.
one purpose of organization is to provide financial assistance to families with duchenne. Medical costs are extremely high for these families. Provided a power wheelchair to a child diagnosed with duchenne muscular dystrophy and medical expenses assistance to a family.
hosted a roundtable discussion on clinical trials for ohio families. Representatives from companies developing drugs to treat duchenne muscular dystrophy answered questions and provided education. Approximately 10 families attended and 2 industry reps.