Register now to attend the upcoming Externally-Led Patient-Focused Drug Development (PFDD) meeting!

All community stakeholders, including individuals, families, medical providers, researchers, pharma/industry, government agencies, and advocates are welcome to attend. Since this is a virtual meeting, we are not limited by space, so all are welcome!!

This is a free online event that will share patient and family perspectives on MTM/CNM, to help deepen the FDA and other stakeholders' understanding of the condition and the needs and priorities of our community! You do not want to miss this incredible opportunity!

Visit our website for the meeting agenda, registration, and further details.

(***For those who may have scheduling conflicts, feel free to register as well, so that you can have simplified access to the recording afterwards.)

P.S. We're also still accepting family videos for a couple more days! You can do a quick "Hello! We are the [blank] family from [city, state] and a video waving "Thank you, Bye!" You can share a short video about "If I were a little bit stronger, I could..." Please refer to our previous newsletter for more video options and instructions. Videos may be uploaded to our Dropbox!