Making a Real Difference: Where Do the Funds We Raise Go?

welcome_logo_original-6351-58655fbf43f94We are proud to have raised more than $500,000 since we started the Softball Challenge, including more than $30,000 this year.

Where does that money go? To find out, check out the letter we recently received from Amanda Hope of the INADcure Foundation, and thanks for your continued support!

From the letter …

I am pleased to report that 100% of the funds you contributed to our Foundation went to support medical research initiatives for INAD. The majority of the funds we distributed in 2018 went to Dr. Paul Kotzbuaer’s Lab at Washington University. As you know, Dr. Kotzbauer is working on gene therapy for INAD. Gene therapy is a revolutionary approach to treating genetic diseases. It involves a one-time delivery of a normal copy of the defective gene which ideally causes the body to naturally produce the missing enzyme, which is what is causing the neurodegeration in INAD. It is the most promising ‘cure’ for our children. …

 To date, the INADcure Foundation has raised approximately $600,000. Over 90% of our funding has or will go towards research. We keep our overhead extremely low, as we continue to be run and advised by a working board of directors and multiple advisory committees. We only have one part-time consultant that assists with day to day operations and development. Our goal has always been to direct as much of the funds raised as possible towards research. 

On behalf of our entire Board of Directors and the families and children suffering from this heartbreaking disease, I want to thank you again for your support. None of the accomplishments above would have been possible without the generous gift from the Bridger and Essex Grebe Fund.

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