Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females.

This month, we are featuring Kennedy's disease. Kennedy's disease is an X-linked disorder characterized by muscle weakness and wasting that typically manifests in adulthood. It is caused by a mutation in the AR gene, which is responsible for encoding a protein called an androgen receptor. Studies show that some female carriers may experience muscle weakness and neurodegeneration.

Today, we are bringing on Joan, a 62-year old Kennedy's disease carrier. She has been married for 42 years and has two sons ages 36 and 37.  She lives in the country in Virginia and keeps busy with gardening, weaving, cooking, and spending time with her llama and goats. She runs a monthly Zoom support group for KD carriers. 

Carrier Connections is sponsored by Horizon Therapeutics, Sanofi, and Ultragenyx Pharmaceutical. For more information about our organization, check out ⁠⁠rememberthegirls.org⁠⁠.