Community
Lilly’s Story
Lilly is a passionate and dedicated advocate for disability and Rare Disease communities. She is a 2019 alumna of Whittier College and lives in southern California. Lilly is currently pursuing a career in mental health counseling. She has worked at various disability and rare disease advocacy organizations including Undiagnosed Diseases Network Foundation, Disability:IN, Global Genes, RespectAbility, and Illumina. Additionally, Lilly serves as an advisory council member for the Ventura County Aging and Disability Resource Center Advisory Committee and an Independent Living Resource Center board member. She enjoys sharing her experiences as a young woman with a disability through her writing. Lilly hopes to show the younger generation what is possible by being a positive role model.
“Be who you needed when you were younger.”
More Patient Stories
Grace
Grace is 4 years old, has two older brothers and loves the colour pink. We live in Sydney, Australia, and Grace loves to go to the beach with her family…
Maya
We welcomed our first child, Maya, into the world in February 2013. She was strong, happy, healthy and ‘typical’ in every way at birth. Our first gut feeling…
Kendall
Kendall is affected by the ADCY5 variant. She is currently 23 years old, and has lived in Tennessee for the past 5 years since moving from Florida, where we’re originally from…
Newly Diagnosed?
The most important thing our rare ADCY5‐related movement disorder (ADCY5‐RMD) community needs to do is come together to build knowledge and collect information.