To raise funds to support research for a cure for Neurodegeneration with Brain Iron Accumulation (NBIA), abnormal iron accumulation in specific parts of the brain.
To provide ongoing assistance for Dana to improve her overall quality of life in her struggle against NBIA, to help slow down – if not regress the onslaught as her disease takes over her body.
Impact Statement |
Dana has a form of NBIA known as “atypical PKAN” ( Pantothenate Kinase-Associated Neurodegeneration). The symptoms and physical findings vary from case to case. Because of the rarity of NBIA, very little research has been done until recently. Her future is uncertain and she and her family have lived with this uncertainty for over a decade now. She may wake up tomorrow and not have the ability to talk, walk or eat.
Now as a young lady of 29, Dana’s needs are multiplying as her condition progresses and the quality of her life is threatened – unless she can get the medical care, and home care, she needs until a cure for NBIA is found.
Establish Funds for Research
Because of rarity of NBIA, very little research has been done until recently. While there is massive attention being made and money being raised for ALS research through the Ice Bucket Challenge, what about raising awareness and funds for people living with a rare disease.
As they impact relatively fewer people, there’s less public awareness of so-called “orphan” diseases, and without awareness, fewer dollars are donated for those conditions. There are approximately 7,000 diseases now identified in this population and more than 25 million Americans are currently afflicted.
There is a cure for this disorder; it’s up to us to help find it.
Home Care Support and Needs
To enable Dana to live life to the fullest, to provide her with every known opportunity to extend her life and provide the maximum of comfort given her condition.