Welcome to Hope's Hope

In Loving Memory

Chloe Rae Solis

Chloe Rae Solis

November 10, 2001— September 2, 2009

Hope Elizabeth Johnston

Hope Elizabeth Johnston

April 18, 2002 — July 30, 2008

Steven Alan Cusic, Jr

Steven Alan Cusic, Jr.

August 24, 2000— February 18, 2009

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).


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.

Hope's Hope logo

Survive & Thrive

Recent Events

6th Annual Golf Classic

2011 NBIA Family Conference

Latest News

PeakFest 2011

Thank you to the Kiwanis Club of Apex for allowing Hope's Hope to share their booth and promote the ...

NIH Partnership in Research Grant Application

On January 11, 2008, Hope's Hope submitted a grant application to the NIH. Unfortunately, we were not selected as ...

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