Joan (Joni) Wilken lives in Southern Illinois with her husband Pete and is the grandmother of a child with JDM. She has worked for the Federal Government for 33 years.

She is currently working as a Team Leader on a special project for Cure JM. The team's goal is to inform every doctor in the U.S. who might come in contact with a JM patient, either before or after diagnosis.

Her granddaughter was diagnosed with JDM very quickly, but she knows that isn’t always the case. In organizing and leading a project to raise awareness of JM within the medical community she hopes that more children will receive a timely diagnosis in the future.

Joni raises awareness about JM in many ways, but she especially prefers to visit doctors and other health professionals in person, providing them with literature, information and a presentation about this rare disease. She is helping others learn how to do the same and is organizing other ways to spread the word across the country.