Seed Money Dana Jones Foundation - PKAN

Dana Jones is a young lady living in Mt Juliet Tennessee with her parents who just celebrated her 28th birthday. Dana has a form of NBIA (Neurodegeneration with Brain Iron Accumulation) known as "atypical PKAN" (Pantothenate Kinase-Associated Neurodegeneration).This very rare disease strikes mostly children in their teens and is incurable with an average life expectancy of up to 30 years old.


The family are establishing a non-profit 501 (C) 3 charity in the State of Tennessee to help to provide financial assistance to Dana and Dana's caregivers to be able to give her every possible assistance to slow down the progression of the disease. In addition, the foundation's purpose will be to set aside money for an endowment to provide ongoing financial support to researchers to find an ultimate cure.


Paul Willies and Carlisa Kearney (Dana's aunt, and sister of Ronda and Randy Jones, Dana's parents) will be the initial Executive Director and incorporator of the foundation.


We are seeking $5,000 to provide the financial means to be able to incorporate the Dana Jones Foundation, Inc in Tennessee (what will be a registered non-profit). This money will allow us to file for the incorporation, write the initial by-laws, establish the initial board of directors, set-up a website, and apply to the IRS for the 501 c 3 status that will allow the organization to go on and seek grants and further support for the ultimate cause.


Any money that is donated in this initial funding process will receive a tax receipt on successfully establishing the organization, and will also be known as original founders of the organization.


To read more on this crippling disease please see
http://www.ncbi.nlm.nih.gov/books/NBK1490/

www.danajonesfoundation.org (registered and under construction).
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Organizer

Paul Willies 
Organizer
Oldsmar, FL
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