With so many exciting happenings at PPMD and in our community, it is too easy to rush from one “fire” to the next and forget to celebrate our successes. Take a moment with us, and check out one success: our new Care for Duchenne pages.
We created the new Care for Duchenne section based on input from parents and people with Duchenne. You wanted information to be easier to find; to find content by care topic or by the stage of Duchenne; and you wanted improved ease of reading. At PPMD, we need our materials kept up-to-date and clearly associated with the guidelines in the Care Considerations. Voila! Please visit, explore, and let us know what you think.
The information in the Care section is now organized both by areas of care and by stages of Duchenne. Each section has key facts to remember, followed by more detailed information in a fact-sheet format. We provide links to more in-depth information, both written and video, for those who need or want to know more. The “emergency care” and “surgery and anesthesia” sections are available for quick, one-click access from any page.
Of course, our work is not done. Even as you read this, the next set of content is being planned and written. We’ll continue to add new care topics and more detailed information under each care heading, as well as continually update care information so you have access to information about the latest developments, evaluations, and therapies. We are also adding video elements for many care topics.
PPMD is dedicated to the care of patients and families living with Duchenne. If you have suggestions or ideas for the care site, please email Holly Peay, PPMD VP of Outreach and Education (holly@ParentProjectMD.org). If you have care-related questions, please email Kathi Kinnett, PPMD VP of Clinical Care (kathi@ParentProjectMD.org). We hope to hear from you. Happy “Care for Duchenne” reading!