Cindy Hubert has been married to Bruce, her high school sweetheart, for more than 46 years, and they live in Mount Vernon, Washington. Cindy was diagnosed with myotonic dystrophy type 1 (DM1) in 2013, and her three adult sons as juvenile-onset adults (JOAs), soon afterward. Her only daughter, had symptoms consistent with congenital myotonic dystrophy (CDM) at birth and passed away in 1988 at eight and a half months old.
Cindy is a Physical Therapist Assistant who worked in acute care before spending her later years as a Lead Family Resources Coordinator and Public Awareness Contact in her county’s the birth-to-three program. Hiking, Nordic skiing, gardening, knitting, and reading are Cindy’s favorite activities. She dreams of beautiful days spent working in her greenhouse, spinning wool, and playing violin or cello with friends.
Without any prior family history, DM came into Cindy’s life unexpectedly the day her daughter was born. Yet the cause of her daughter’s, son’s, and her own symptoms would not be known for another 25 years. Cindy believes more can be done to better identify clues pointing to DM as a potential cause of symptoms in families like hers. She hopes sharing her story will help to bring this about.
In 2021, Cindy began co-facilitating the support group serving all DM families in the Pacific Northwest area of the United States. Click here to read Cindy’s Community Interview.
