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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.
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