It is with great sadness and heavy hearts that the MDF mourns the passing of our founding chairma
Support can come from family, friends, churches, psychotherapists, healthcare professionals as well as strangers that live with the same disease and life experiences as you. MDF is comprised of families living with myotonic dystrophy and we welcome you to our support family. You likely fit into one of the following categories:
- I am living with myotonic dystrophy
- I am a parent caring for a child, young adult or adult living with myotonic dystrophy
- I am a spouse caring for a husband or wife living with myotonic dystrophy
- I am a non-affected family member of a person living with myotonic dystrophy
- I am a grandparent and have the genetic link to myotonic dystrophy in the family
- I am a widow/widower of an individual who lived with myotonic dystrophy
- I am a friend of a person living with myotonic dystrophy
Myotonic dystrophy is a chronic, progressive disease and to date there is no treatment or cure. We as individuals, family members and friends need to learn to manage the symptoms of myotonic dystrophy to maintain our quality of life. Support groups will help you understand the physical, psychological and emotional aspects of the disease. You can build alliances with other individuals in similar positions and learn from one another. In the process of giving support, you'll receive it as well. As you share your experiences, keep in mind that the symptoms of myotonic dystrophy affect each individual differently, even those in the same family.
As most families coping with the disease know, finding a local support group can be challenging. Some support groups are coordinated through non-profit organizations, but may not be specifically focused on myotonic dystrophy. Because of this, many home grown support groups have popped up in the United States, around the world and on the internet. Click on these links to find a support group near you, join the MDF Community Forum, or tell us about a support group.