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Our mission includes providing hope and financial support to patients and supporting research to find a genetic cure.  We will accept donations through PayPal.  Your donation will go directly to a secure foundation account where we will establish a foundation fund.  This fund will help provide support to patients by offsetting medical expenses, offer available grant money to research organizations according to our foundation missions and grant criteria and to cover operating expenses.

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To apply for patient support please fill out the contact us form and mark patient assistance.  We will send you an application and required supporting documents. Financial support offered will be based on available funds.

EIN 46-4279769

We are a tax-exempt 501c3 nonprofit organization founded Dec 9, 2013