Varvara’s Ravicti® supply

Varvara’s Ravicti® supply

Throughout 2024, BfS covered Varvara Mayer’s Ravicti® supply until January 2025.

Dear friends, we’d like to extend our heartfelt thanks to everyone who supported the fundraiser for Varvara Mayer and our Unbiased Inheritable Disease Program this year.

Thanks to your support, we were able to purchase enough Ravicti® throughout 2024 to last until the end of January 2025, by covering $23,769 out of $43,000 of the total annual supply cost.

Varvara has been diagnosed with the genetic mutation SLC6A1, which is associated with epilepsy, developmental delays, digestive issues, poor coordination, and autism spectrum disorders.

Thanks to the annual supply of Ravicti®, Varvara has experienced significant improvements: her seizures have stopped, her digestion and coordination have improved, and her speech is gradually developing. Children with this mutation often face mobility challenges and require assistive devices, but Varvara is able to walk, run, jump, and swim. She’s learning to become independent in her daily life, has started socializing, and attends developmental courses.

Her family is endlessly grateful for your support, and we hope Ravicti® will further grant Varvara with a chance to love a fulfilling life. Go, Varia!

Thanks for supporting our mission!