Aug 20, 2019
In this episode we are talking about Timothy Syndrome with our guest Courtney Waller. Timothy syndrome is a rare genetic disorder that affects the heart and several other organs. Timothy syndrome is also associated with abnormalities of fingers or toes that are fused together through webbed skin between the digits (cutaneous syndactyly), specific facial features, a weakened immune system, developmental delays and episodes of low levels of sugar in the blood (hypoglycemia).
Courtney Waller is the co-Founder of Timothy Syndrome Alliance, and mom to a 5 year old daughter with the condition.
She has been a legislative advocate for the rare disease community for the past five years. Primarily working on legislation by state. She is the founder and principal of Policy Served Rare, a patient centered think tank focusing on policy that focuses on health and mental health care for the rare disease community.
Website: www.SADS.org/TSA
Twitter: @Timothy Syndrome
Facebook: Policy Served Rare @policyservedrare