The federal CFS Advisory Committee meeting is only two weeks away. This will be an in-person meeting, but will not be held in the Health and Human Services building. Denise Lopez-Majano and I reached out to HHS for important information about the meeting logistics.
Location: The meeting will held on January 12th and 13th at the Barbara Jordan Conference Center (2nd floor) of the Henry J. Kaiser Family Foundation – 1330 G St, NW – Washington, DC 20005. The building is ADA accessible (modular wheelchair ramp, elevator, etc). At this time we do not know about security procedures for entering the building. For those arriving by public transit, the Metro Center Station, 607 13th St NW, serviced by the Blue,Orange, Red and Silver lines, is about 2 blocks east of the Kaiser Family Foundation. The station’s only street elevator is on the east side of 12th Street north of G Street.
Important Note About Location: The Kaiser Foundation building is only three blocks from the White House, and the meeting will be held one week prior to the inauguration. We have no information on whether there will be traffic disruptions or parking issues in the vicinity.
Rest Area and Restrooms: The meeting space will have a lounge area (sofa, loveseat) where people can rest while still listening to the meeting. An additional small, quiet rest area is located on the 3rd floor (accessible via elevator). The restrooms are estimated to be about 50 feet away from the conference room.
Food Service: There will be no food service at the meeting, and the building does NOT have a cafeteria. You will be permitted to bring your own food, have food delivered to the building, or leave the building to get food. There are several takeout places within a block or so, including a pizza place right across the street.
Registration Deadlines: If you wish to attend the meeting in person, or if you want a public comment slot (in person or by telephone), you must send an email to cfsac@hhs.gov by the close of business on January 5, 2017. You may also submit written comments (details in the Federal Register notice), and we have heard that the deadline for that is also January 5th.
Public Comment Topics: You may offer public comment on any topic relevant to ME. However, the Committee has specifically requested comment on:
- school accommodation issues
- methods/programs for meaningful stakeholder engagement
- clinical care and medical education challenges
- and/or the stigma associated with this disease
Don’t let this important opportunity go to waste. Do what you can to make our voices heard. Attend the meeting, offer public comment, or watch the meeting via webinar. CFSAC needs to hear from us so that it can make the best possible recommendations to HHS.
My thanks to Commander Gustavo Seinos, the Designated Federal Officer of CFSAC, for providing some of the details about logistics.
I have signed up for comment at the meeting.
Hopefully I will control my temper this time around.