A Letter from Our Founder
Dear Ashley,
I trust that you’re finding moments of joy amidst the heat of July. As we navigated through this month, filled with both busyness and emotions, I want to acknowledge the news our family received regarding our oldest son, Zac’s, positive test for LCC/Labrune Syndrome. Such news brought about a range of feelings that we are still processing. He is asymptomatic for now, so we will continue to monitor and take each day as it comes.
As we prepare for the upcoming school season in August, I invite you to join us for our first community zoom chat on August 21st at 10 am CT. This chat will provide a space to discuss school-related topics and share insights on LCC. Your presence and participation would be greatly appreciated as we come together to offer support and understanding within our community.
With LOVE + HOPE
Ways to Support
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Patient Spotlight
Zac
Zac, a vibrant 16-year-old high school student and member of the band, was recently diagnosed with Labrune Syndrome. Despite the shock of the diagnosis, he is staying strong and positive. His diagnosis was confirmed through genetic testing and MRI imaging, revealing a small area of calcification. Zac is grateful for your unwavering support in our mission to find a cure for Labrune Syndrome. Your contributions are making a real difference in the lives of individuals like Zac, offering hope and progress in the fight against this disease. Thank you for standing with us in this journey towards a future free of LCC.