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.
Impact Statement |
Dana had 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 was uncertain and she and her family lived with this uncertainty until the final year.
Dana passed at age 38, living many years beyond the initial predicted life span, thanks in part to the close attention of her doctors and caregivers. Dana’s needs multiplied as her condition progressed. The foundation hopes to reach out to others suffering in a similar way and offer tangible support for medical care, and research, until a cure for NBIA is found.
Goals |
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 provide others with every known opportunity to extend their life’s and provide the maximum of comfort given their individual conditions as a legacy to Dana.