Live Like Laura Fun Fund

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The vision of the Live Like Laura Fun Fund (LLLFF) is to enable people affected by cystinosis to participate in life’s many adventures.    

The LLLFF honors Laura McGinnis. Our “squirrel” was a woman who lived life largely and loudly. The idea that she could not do something (cystinosis or not) was foreign to her- she found a way. In her short time with us, Laura was determined to make the moments count. 

Through the LLLFF, we hope to empower cystinosis warriors to create their own memories.  

Need help buying that concert ticket? Purchasing a theme park pass to ride the largest rollercoaster? Trying to conquer that rock climbing wall? Whatever it is that may bring you joy, we want to help you seize the day!  

Let’s break down the financial barrier standing in front of your next adventure.  

Review the criteria below and complete the form to be considered. 

People affected by cystinosis and their siblings may apply. Each LLLFF award amount will not exceed $1,000 USD. The number of awards will depend on fundraising efforts. If you are under the age of 18, the LLLFF committee requires parental consent prior to issuing award funds. Please allow 8-10 weeks for your application to be reviewed. Once awarded, you/your family will be ineligible to reapply for the LLLFF for three years or as determined by the LLLFF review board.  

Live Like Laura Fun Fund Application

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  • Only you/your healthcare team can determine if you are healthy enough for your adventure. The LLLFF and the CRN take no responsibility for any injury or additional expenses associated with your chosen adventure. The LLLFF is a scholarship only and cannot substitute medical advice. The adventure examples were listed in a pre-COVID-19 world. You are responsible for making decisions in your best interest. For questions, email frankiemcginnis@gmail.com.
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