Introduction |

On January 22, 2002, at the age of 17, after years of doctor visits and tests for symptoms such as shaky hands, degeneration of the retina, clumsiness, gait (walking) problems, difficulty controlling movement, speech and choking, frequent falls, breaking bones and learning disabilities, Dana was diagnosed with Neurodegeneration with Brain Iron Accumulation (NBIA). Dana passed peacefully at home on April 25th, 2023. Her family is committed to continue the foundation in her name – to provide assistance to those individuals and organizations working for a cure.

NBIA also known as “Atypical PKAN” (Pantothenate Kinase-Associated Neurodegeneration); abnormal accumulation of iron in certain areas of the brain.  The prognosis was grim, with no known cure. NBIA disorders usually begin in childhood, are relentlessly progressive and cause severe disability, eventually leading to a premature death.

The symptoms and physical findings vary from case to case. Because of the rarity of NBIA, very little research has been done until recently.

This Foundation has been setup by the family to seek help from individual and corporate donors to provide financial support towards research for a cure as a legacy to Dana.

Please watch this video Dana’s family created to help the Big Payback Fundraising event. Thanks for your support!

Contributions to Dana Jones Foundation, Inc. are fully tax-deductible.

Our mission: “To raise funds to support research for a cure for Neurodegeneration with Brain Iron Accumulation (NBIA), abnormal iron accumulation in specific parts of the brain, as a legacy to Dana Jones.”

Dana Jones Foundation, Inc is a registered charity with the State of Tennessee Division of Charitable Solicitations and Gaming (CO20079) and a 501(c)(3) public non-profit organization under the Internal Revenue Service (FEIN 46-2613758)