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About Us
Hope's Hope was established in February 2005 by a dedicated group
of volunteers committed to providing assistance to families who
have children battling a class of rare, terminal neurodegenerative
disorders. The inspiration for Hope's Hope was Hope Johnston of
Apex, North Carolina who was born with the rare genetic disorder
INAD (Infantile Neuroaxonal Dystrophy).
Mission
The purpose
of Hope's Hope is to raise awareness of the debilitating and progressive
neurodegenerative diseases INAD (Infantile Neuroaxonal Dystrophy),
PKAN (Pantothenate Kinase Associated Neurodegeneration), and other
NBIA (Neurodegeneration with Brain Iron Accumulation) disorders
of childhood; to connect families with children afflicted with
these diseases; and to provide financial assistance and supportive
services to these families through national and community partnerships.
Through contributions,
fundraisers, advocacy, and education, Hope's Hope strives to minimize
the emotional hardships and financial burdens that often accompany
NBIA disorders, while raising awareness about these diseases that
we hope will lead to better care, disease treatment, further research,
and, ultimately, a cure. Hope's “hope” is to eradicate
all NBIA-related disorders. |