Make a donation to Stanford University
If you have $250,000 or more to donate now or in your will, then I recommend giving the money to Stanford University. Make sure that the money is specifically earmarked for DSAP genetic research. Give the Executor of your estate the latitude to make sure the money is put to proper use.
Be sure to contact the people at Stanford first.
Here's just a starting point for the verbiage to have in your will/trust:
[percentage of the residue / pecuniary amount] to THE BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UNIVERSITY, an educational institution, Stanford, California, federal employer identification number 94-1156365 (“the Board”).
Upon the death of the Settlor, the Trustee shall distribute [percentage of residue / pecuniary amount] to the Board for the purpose of supporting genetic research on Disseminated Superficial Actinic Porokeratosis (the “Research”). If the Board is not or will not be performing such Research at or within a reasonable period of time after my death, this distribution shall instead be made to such one or more charitable organizations performing such Research as shall be designated in writing by the Trustee. As used in this instrument, the term “charitable organization” shall mean any organization or trust, contributions to which are deductible under Internal Revenue code sections 501(c)(3), 2055, and 2522 at the time any distributions shall be made to the organization or trust under this instrument.
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