This is a historic moment for our entire Duchenne community. There is power in numbers, so let’s do this together!
Our organizations are coming together to help bring our united and powerful Duchenne community to participate in and witness this important event.
We want to support each other and make it as easy as possible for you to participate. Simply register here.
How can we help you? We are committed to help and coordinating our community in these ways:
· If you are planning to participate in person, please let us know so we can bring people together to have the greatest impact during the open public hearing.
· For people and groups who are going to speak, we are helping to group speakers together, prepare comments and practice in advance of the open public hearing.
· For everyone who is planning to attend the Advisory Committee meeting, we are here to help you with logistics once you’re on the ground with shuttle service and other assistance the day of the meeting.
· If you want to come but need help getting here, there is financial help available for air fare, mileage reimbursement, and hotel accommodations. Let us know what your needs are and we will respond to you individually.
· For attendees, on Thursday, January 21, we are hosting a reception for our community from 5:00-8:00pm at the Sheraton Hotel in Silver Spring. We would love everyone to join us.
· Witness history from a distance. If you can’t attend in person, you can still participate in real and meaningful ways. We can help you submit written testimony. There is a timeline and a deadline and we will help you meet those. There will also be live online video stream on the day of the Advisory Committee. We will have lots of other ways to gather together online that day to watch and share our thoughts.
TODAY, all we need you to do is register here and let us know how you want to participate. We will work with you individually depending on how you wish to participate, whether in person or in some other way, such as submitting written testimony, logging into the live feed, and many other ways. Let’s do this together!
TAKE A STAND. FILL A SEAT.
RAISE YOUR VOICE.