Help Ashley raise money

Friends and family,

I am excited to share that I am a member of #TeamValeria running the Falmouth Road Race in August in support of Valeria’s foundation for KCNT1 Research. 

This cause is incredibly close to my heart. In May of last year, I began working as a part time caregiver for Valeria. She and her family quickly became like a second family to me here in Boston. Sadly, Valeria lost her fight with this devastating disease in September 2021. Although she is no longer physically here with us, her beautiful legacy lives on through those of us who had the honor of knowing her. 

Thank you for your time and consideration in making a donation. Your support will help us raise awareness and fund KCNT1 research to help other children suffering from the same condition. 

Valeria Schenkel was born on 14 February 2018 in Switzerland. A few days after her birth, the little girl suffered her first epileptic seizure. The resulting diagnosis is devastating. Due to a de novo mutation on the KCNT1 gene, Valeria would be denied any cognitive or motor development in her life. Since then several seizures occured daily and Valeria suffered every day. Valeria's parents, Alexandra and Mario Schenkel fought for their daughter. Together with Yale School of Medicine and neurogeneticsts from Harvard Medical School (Boston Children's Hospital), they have set up a program that corrects the de novo mutation on the KCNT1 gene and stops its fatal effects. An Antisense Oligonucleotide named after Valeria - "Valeriasen" was first administered in September 2020. Valeria's seizures declined drastically but unfortunately Valeria lost her fight against her devastating disease in September 2021. Valeria has achieved many things in her short life. She has demonstrated, that drugs for orphan diseases can be developed in record time. Dosed correctly and given to other children with proper precautions and regular monitoring, Valeriasen is a promising drug. Other children are already being treated with it. Valeria has paid a very high price, but in return she has brought science a decisive step forward. Thanks to her fight for a chance in life, many children with a rare disease will be able to live a healthier and happier life.