Navigating life with Duchenne can be daunting and time consuming for families. We rely on each other to share wisdom and information in order to make the process smoother and life a bit easier. The best guidance we can get is from those who have been through a given situation, sharing what they’ve learned to help others navigate resources that exist.
PPMD strives to find better ways to assist families with their journey. With the vast amount of resources that exist online, we try to point families in the right direction, connecting them with each other and to websites online that can educate them about how to navigate through issues that impact their daily lives.
A Community Project
PPMD has launched a new Community Resource Center for families on our community site aimed at providing helpful information and links to national and state specific resources for the community tailored to guide living with Duchenne.
We’d like to thank our FACES Coordinators and PPMD's Adult Advisory Committee (PAAC) members for providing initial feedback on the first phase of the Community Resource Center.
Our new Community Resource Center provides helpful links on an array of topics, including:
State Specific Resources
One of the areas that needs your special attention are the state specific pages.
You know your state better than anyone. You have knowledge about the state specific resources that have made your journey a bit easier. Please provide us with feedback on any website, agency, organization, or experience you have had navigating something within your state.
Our goal is to make these state specific pages robust for families so that together we can make them a go-to location for families in your state.
We need your help!
It is critical that YOU help to make the Community Resource Center the best it can be.
We want your feedback about what is missing from the center, what may not be helpful, and ultimately for you to provide us with information about experiences you have had in your journey that should be included to help others in their journey.
The Community Resource Center is, and always will be, a “work in progress” so that we can constantly update and evolve the site.
Visit ParentProjectMD.org/Resources today to help us provide helpful information and resources for our community!