Posts Tagged 'supporters'

Link for CFSAC LiveStream

 

On Wednesday October 3rd and Thursday October 4th, the CFSAC meeting will be LiveStreamed. The link is:

http://www.hhs.gov/live/

 

CFSAC Meeting October 3 – 4

Agenda
October 3, 2012

9:00 am

Call to Order
Roll Call

Gailen Marshall Jr. M.D., PhD
Chair

9:15 am

Welcome Statement from the Assistant Secretary for Health

Howard K. Koh, M.D., M.P.H.Assistant Secretary for Health
U.S. Department of Health and Human Services

9:45 am

Opening Remarks

Housekeeping

Gailen Marshall Jr. M.D., PhD Chair

Nancy C. Lee, M.D.
Designated Federal Officer

10:00 am

Biomarkers
An Overview and Future Look

Jordan Dimitrakoff, M.D., Ph.D.
Mary Ann Fletcher, Ph.D.
Committee Members

11:00 am 

Break

11:15 am 

Public Comment

Public

12:15 pm

Lunch Break

1:15pm

Agency Updates:
HRSA, NIH, FDA

Ex Officio Members

2:15pm

FDA and Drug Development

Sandra L. Kweder, M.D., F.A.C.P.
RADM U.S. Public Health Service
Deputy Director, Office of New Drugs
Center for Drug Evaluation & Research, FDA

3:15 pm  

Break

3:30pm

Public Comment

Public

4:30pm

Committee Discussion and Plans for Day 2

Committee Members

5:00 pm

Adjourn

Nancy C. Lee, M.D.

Agenda

October 4, 2012

9:00 am

Call to Order
Opening Remarks
Roll Call


Housekeeping

Gailen Marshall Jr. M.D., PhD
Chair

Nancy C. Lee, M.D.
Designated Federal Officer

9:15 am

Agency Updates:
CMS, AHRQ, CDC, SSA

Ex Officio Members

10:15 am

Social Security Administration

Arthur R.(Art) Spencer
Associate Commissioner,
Office of Disability Programs
SSA

11:15 am

Break

11:30 am

Public Comment

Public

12:30 pm

Lunch Break

Subcommittee Members

1:30 pm

ME/CFS Organizations

Panel Discussion
ME/CFS Organizations

2:30 pm

Break

2:40 pm

ME/CFS Case Definition – A Path Forward

Gailen Marshall Jr. M.D., PhD
Chair
Committee Members

3:40 pm

Committee Discussion: Finalize Recommendations

Committee Members

5:00 pm

Adjourn

Nancy C. Lee, M.D.

 

videos of the June 13/14 2012 CFSAC meeting are now online

The videos are available to view.

 

http://www.youtube.com/watch?v=C4a41ZspGfw&list=PL600CB038194B4593&index=2&feature=plpp_video

http://www.youtube.com/watch?v=qY_X4XEx47w&list=PL600CB038194B4593&index=3&feature=plpp_video

http://www.youtube.com/watch?v=1SUqrq6l6RU&list=PL600CB038194B4593&index=4&feature=plpp_video

http://www.youtube.com/watch?v=eXDpTky6zCQ&list=PL600CB038194B4593&index=5&feature=plpp_video

http://www.youtube.com/watch?v=Nk-A_drP6C0&list=PL600CB038194B4593&index=6&feature=plpp_video

http://www.youtube.com/watch?v=nxe4lzKNxhQ&list=PL600CB038194B4593&index=7&feature=plpp_video

http://www.youtube.com/watch?v=7ydzt9qEDLk&list=PL600CB038194B4593&index=8&feature=plpp_video

http://www.youtube.com/watch?v=otMR-txvjd8&list=PL600CB038194B4593&index=9&feature=plpp_video

http://www.youtube.com/watch?v=IRgGeob2cPA&list=PL600CB038194B4593&index=10&feature=plpp_video

http://www.youtube.com/watch?v=ubjGm5dILpY&list=PL600CB038194B4593&index=11&feature=plpp_video

http://www.youtube.com/watch?v=Ylx9UgeYyCs&list=PL600CB038194B4593&index=13&feature=plpp_video

http://www.youtube.com/watch?v=iDbs4ztokuM&list=PL600CB038194B4593&index=14&feature=plpp_video

Thank you

Thank you to everyone who has helped and supported Speak Up About ME. We appreciate you!

Thank you to everyone who participated in/watched the June 2012 CFSAC meeting.

Thank you to each of you who make a difference each day in the lives of people with ME/CFS!

 

SPEAK UP ABOUT ME June 13th and 14th, 2012

JOIN US!

Speak Up About ME especially welcomes early onset patients.

Who:    young people with ME/CFS and ME/CFS advocates

What:   Speak Up About ME

Where: Washington DC Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting

Why:    to Speak Up About ME –

to raise awareness about ME/CFS because ME/CFS affects people of all ages/genders/etc.,

to provide public comment to the CFSAC committee,

to be Invisible No More!

When: June 13th and 14th 2012

We are going to YANK the nation’s heartstrings again.

Young People with ME/CFS –

JOIN US

Speak Up About ME, to be

Invisible No More!

Why is my participation important?

Physical presence and providing your public comment in person at the CFSAC has great impact and is an empowering experience.

Providing your public comment via DVD is also very powerful.

Public comment can be provided by phone and in writing by those who are unable to attend in person.

(Read more about public comment here: https://speakupaboutme.wordpress.com/public-comment-at-the-cfsac-meetings/ )

 

We gladly welcome mentors, volunteers, supporters, contributors.

 

Help defray expenses for Speak Up About ME participants!

https://speakupaboutme.wordpress.com/support-speak-up-about-me/ for information on how to contribute.

 

Contact Speak Up About ME at gmail dot com  (all one word, no spaces) for more information.

 

If you are so sick, why are you taking part in Speak Up About ME?

Advocacy and empowerment– we don’t want anyone else to go through what we are going through. By raising awareness, we work to ensure that no one else has to go through this.  This is a personal sacrifice and it takes weeks for us to return to our previous level of functioning.  And yet, participation is empowering, despite the toll it takes on us.

 

What can I tell my school about the event?

Speak Up About ME participants are part of government in action. Participating in the CFSAC and/or meeting with Congressional representatives on Capitol Hill are integrated learning experiences (advocacy, public speaking, science, geography, social studies).

 

Support Speak Up About ME

SUPPORT Speak Up About ME

 

We gladly welcome mentors, volunteers, supporters, contributors.

We welcome your help!  SpeakUpAboutME at gmail dot com


Thank you for helping us Speak Up About ME!

We are working to make us all, Invisible No More!