Welcome to Hope's Hope
In Loving Memory
Chloe Rae Solis
November 10, 2001— September 2, 2009
Hope Elizabeth Johnston
April 18, 2002 — July 30, 2008
Steven Alan Cusic, Jr.
August 24, 2000— February 18, 2009
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).
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.
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.