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 every moment count.
Through the LLLFF, we aim to empower cystinosis warriors and their siblings to create their own memories because everyone deserves moments that feel bigger than the day-to-day.
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 it.†
Let’s break down the financial barrier standing in front of YOUR next adventure.
Limited-Time Opportunity: Live Like Laura Legacy Award
In honor of what would have been Laura’s 30th birthday, the LLLFF is offering a special, one-time $3,000 USD Live Like Laura Legacy Award.
This award is designed to create a meaningful first: an experience that may feel just out of reach, but becomes unforgettable once it’s lived. A first concert. First flight. First Broadway show. First professional sporting event. First truly special meal. A core memory, made possible.
The Legacy Award is open to individuals and families living with cystinosis who have never received LLLFF funding. Priority will be given to those pursuing a new milestone or adventure that reflects Laura’s spirit of living fully and fearlessly. To be considered, please indicate “LEGACY” on your application.
Applications close on June 1, 2026.
Recipient will be notified by June 15, 2026.
Standard LLLFF Awards
People affected by cystinosis and their siblings may apply for standard LLLFF funding. Each award will not exceed $1,000 USD, and the number of awards distributed will depend on available funding. If you are under the age of 18, parental consent is required prior to issuing funds.
Please allow 2–3 weeks for your application to be reviewed. Once awarded, recipients are ineligible to reapply for five years, or as determined by the LLLFF review committee.
This program is not intended for bill payment assistance. Applicants should ensure that requested expenses align with the purpose of creating meaningful experiences. All funds are granted at the discretion of the LLLFF review committee.
Your adventure awaits – Apply today!
Review the criteria and complete the application form to be considered.
For questions, please contact Frankie at frankiemcginnis@gmail.com.
† Only you/your healthcare team can determine what is best give your personal health and well-being. 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 is not a substitute for medical advice.