Hope Elizabeth Johnston April 18, 2002 — July 30, 2008
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 is Hope Johnston of Apex, North Carolina who was born
with the rare genetic disorder INAD (Infantile Neuroaxonal Dystrophy).
The purpose of Hope's Hope is to raise awareness of the debilitating
and progressive neurodegenerative diseases INAD, PKAN (Pantothenate
Kinase Associated Neurodegeneration), and other NBIA (Neurodegeneration
with Brain Iron Accumulation) disorders of childhood, and to provide
supportive services and financial assistance to families of children
afflicted with these diseases.
Mission
Through contributions,
fundraisers, advocacy, and education, Hope's Hope strives to maintain
a family's quality of life and raise 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 INAD, PKAN and all other NBIA disorders.
Note about GAN
In the past, Hope's
Hope has also supported Giant Axonal Neuropathy (GAN). In April
2008, another organization was founded, Hannah's Hope Fund, which
supports GAN exclusively. It is a parent, family and friend driven
organization dedicated to finding a treatment and a cure for GAN.
They are funding research, raising awareness, and facilitating
communication to stop this ravaging disease.
Hope's Hope is very
supportive of Hannah's Hope Fund. For future information and services
regarding GAN, we encourage you to visit their website at www.hannahshopefund.org.
In
Loving Memory
Hope Elizabeth Johnston April 18, 2002 — July 30, 2008
Poem by Heather Rochelle in memory of Hope Johnston
Would
you like to help the Johnstons?
A
Care Calendar has been set up online for the Johnston family.
This is a way for us to communicate regarding their meal, child
care, visiting and other needs they may have at this difficult
time. It is a way for us to feel as though we are helping without
intruding, so to speak. You can log on and meet a need.
The website is www.carecalendar.org
Helper Logon: Calendar ID: 6096
Security Code: 5792
