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).
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. Imagine waking up and not being able to walk, speak, dress or feed yourself.
The symptoms and physical findings vary from case to case. Because of the rarity of NBIA, very little research has been done until recently. Her future is uncertain and she and her family have lived with this uncertainty for over a decade now. She may wake up tomorrow and not have the ability to talk, walk or eat.
Now as a young lady of 30, Dana’s needs are multiplying as her condition progresses and the quality of her life is threatened – unless she can get the medical care, and home care, she needs until a cure for NBIA is found.
This Foundation has been setup by the family to seek help from individual and corporate donors to provide the means to give Dana every possible chance of comfort, to slow down – if not regress the onslaught as her disease takes over her body – and further to provide financial support towards research for a cure.
Join Dana Jones Foundation on Friday, May 3 for a community-wide day of giving! The #BigPayback is a 24-hour online giving event hosted by @The Community Foundation of Middle Tennessee. http://www.TheBigPayback.org
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 provide ongoing financial assistance to Dana Jones in her fight against Neurodegeneration with Brain Iron Accumulation (NBIA), a rare neurological disorder; and support research for a cure.”
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)