💙 Spreading Awareness for GM1 Gangliosidosis 💙
In Honor of Ezra Rosenbeck
GM1 gangliosidosis is an ultra-rare and devastating genetic disorder that affects approximately 1 in 100,000 to 200,000 people worldwide. It’s caused by a mutation in the GLB1 gene, which results in the body’s inability to produce an essential enzyme needed to break down fatty substances in the brain and spinal cord. As these substances build up, they progressively destroy nerve cells, leading to severe neurological decline.
For children like our 2-year-old son Ezra, GM1 gangliosidosis means a life filled with challenges that most toddlers will never have to face. It affects his ability to reach developmental milestones like walking and talking, and it impacts basic functions such as movement, cognition, and even eating. There is currently no cure, and treatments are limited to managing symptoms and improving quality of life.
Join Us for the Benefit of providing light for Ezra through his diagnosis.
To rally around Ezra and bring awareness to this heartbreaking condition, Ezra’s Grandmother Susan Chase is hosting the Benefit for Ezra
•Friday, June 28th
🕚 Starts at 2:00 pm
📍 VFW Post 6289, 122 S Lott Blvd, Gibson City, IL 60936
This event is more than just a benefit. It’s a celebration of strength, love, and hope for Ezra and every child facing GM1.
🧡 Thank You to Our Amazing Supporters
💌 How You Can Help
If you’d like to contribute to the silent auction or support in any other way, please don’t hesitate to reach out. Every act of kindness, no matter how big or small, helps uplift our family and brings us closer to a brighter future for Ezra and others affected by GM1.
From the bottom of our hearts, thank you. We appreciate each and every one of you. 💙
