So many things change with that diagnosis of Duchenne Muscular Dystrophy. For everybody.
As a parent, one of the hardest changes to bear is in our relationships – relationships with close family, extended family, marriages, friendships. Even your own relationship with yourself changes.
In addition to overwhelming grief, members of the nuclear Duchenne family – siblings, parents and the individuals themselves – often feel misunderstood, glossed over, left out, unacknowledged, and often alone on this journey.
Extended family and friends often feel similarly. They don’t know what to say, when to say it, how to say it or even how to help. They’re struggling, too.
Family, Friends and Duchenne wants to help.
- We educate families and friends about how Duchenne is more than a just a muscle disease. Duchenne cognition, behaviors and chronic physiological stress all affect dynamics in the nuclear family, school and friendships.
- We offer guidance to extended family and friends about ways to support their loved ones with Duchenne and their families.
- We host weekly support groups, weekly livestreams & podcasts and Facebook groups to facilitate social inclusion and to strengthen the relationships of individuals with Duchenne Muscular Dystrophy, their families, and their friends.
Please feel free to reach out to us anytime. We look forward to hearing from you.
Lindy@FamilyFriendsAndDuchenne.org, DJ.Kimble@FamilyFriendsAndDuchenne.org
Family, Friends and Duchenne Inc.
is a Full Member of WDO