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  Welcome to Hope's Hope


Welcome to the official Hope's Hope website.
 
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


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www.hopes-hope.org
copyright 2006, 2007
Non-profit 501(C)(3) EIN 20-2345326