*GG*
senior member
- Messages
- 6,389
- Location
- Concord, NH
8:00am until 5:00pm
D.C. (date not set yet)
Spread the word!
It is time to YANK (not tug) the nation's heartstrings again.
Young People with ME/CFS
... JOIN US in Speak Up About ME, to be Invisible No More!
Washington DC this spring (2012)
With the participation of young people and their families at the Chronic Fatigue Syndrome Advisory Committee meetings (CFSAC) in Washington D.C. Historically, few young people with ME/CFS have attended the CFSAC meetings.
Speak Up About ME changes that, as young people with ME/CFS proclaim themselves to be INVISIBLE NO MORE!
Parents, guardians, and representatives from organizations supporting Speak Up About ME, accompanythe young patients to the Speak Up About ME events in Washington.
Speak Up About ME also represents young patients who cannot attend due to health, finances or distance, by delivering their testimony via DVD, telephone, e-mails and letters.
Speak Up About ME wants to empower young people and families, friends and others affected by ME/ CFS to advocate for ourselves and others.
WHO? - Young People with ME/CFS and their families.
WHAT? - Speak Up About ME Invisible No More!
WHERE? - Washington DC, Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting.
WHY? - To raise awareness about ME/CFS, that it affects people of all ages, to provide public comment to the CFSAC committee, to be Invisible No More!
WHEN? - Speak Up About ME will take place again at the spring 2012 CFSAC meeting!
Physical presence and providing your public comment in person at the CFSAC has great impact and is empowering. Providing your public comment via DVD is also very powerful. Public comment can be provided by phone and in writing by those who are too sick to attend in person. (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 going to Speak Up About ME?
Advocacy and empowerment we dont 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?
Participating in the CFSAC and/or meeting with Congressional representatives on Capitol Hill are integrated learning experiences (advocacy, public speaking, science, geography, social studies).
Speak Up
About ME participants are part of government in action.
Speak Up About ME welcomes everyone to participate. We especially welcome early onset patients (as well as their families, friends, caregivers, and advocates).
We gladly welcome mentors, volunteers, supporters, donors.
JOIN US to Speak Up About ME, and Invisible No More!
Contact us at Speak Up About ME at gmail dot com (all one word, no
spaces)
Here are links to some of the public comment presented in May and
November 2011 at the CFSAC:
http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201105_lopezmajano.pdf
http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201105_jacksonsuzan.pdf
http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201111_denise.pdf
http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201111_alexander.pdf
INFORMATION FOR DONATIONS
Your contribution(s) help defray costs such as lunches for Speak Up About ME young participants, taxis to/ from Capitol Hill, trading cards, posters, T-shirts, printing, snacks, water, etc. We would very much like to have sufficient funds to help defray lodging expenses for some participants.
Phoenix Rising is accepting earmarked contributions for Speak Up About ME (thank you PR!). By contributing via Phoenix Rising, you can get a tax-deduction. The (snail) mailing address for Phoenix Rising is (please note there will be an unavoidable delay in processing checks):
Phoenix Rising c/o Cort Johnson
1575 Rockcrest Hills Avenue,
Henderson, NV 89052
This page on Phoenix Rising has a PayPal button on the left side:
http://forums.phoenixrising.me/content.php?167
This is what the PayPal page looks like:
https://www.paypal.com/us/cgi-bin/
webscr?cmd=_flow&SESSION=3QuDol5sPEomQB9WVIT0-
nm3GKoj1RGb9C34EB9VW4qOz4hnBawWwC9AgBK&dispatch=5885d80a13c0db1f8e263663d3faee8d4
026841ac68a446f69dad17fb2afeca3
When you have entered your contribution amount (update the amount before entering any other information) and payment information, you get to a page called "Review Your Donation".
On this page, to the left of the amount you are contributing, is a line that says "Add Special Instructions tothe Seller".
Click on "Add Special Instructions to the Seller" to open a comment box.
In that box type in that the contribution is earmarked for Speak Up About ME (please).
Continue to review your transaction details and finalize your transaction.
On the email receipt from PayPal it will show what was typed (For Speak Up about ME please) into the "Add Special Instructions to the Seller" box.
Please contact Phoenix Rising or Speak Up About ME if further clarification is needed.
RSVP now to speakupaboutme @gmail.com
- We are in the process of updating the Speak Up About ME website. Please bear with us. -
http://www.facebook.com/#!/events/297783933617815/?notif_t=event_invite
D.C. (date not set yet)
Spread the word!
It is time to YANK (not tug) the nation's heartstrings again.
Young People with ME/CFS
... JOIN US in Speak Up About ME, to be Invisible No More!
Washington DC this spring (2012)
With the participation of young people and their families at the Chronic Fatigue Syndrome Advisory Committee meetings (CFSAC) in Washington D.C. Historically, few young people with ME/CFS have attended the CFSAC meetings.
Speak Up About ME changes that, as young people with ME/CFS proclaim themselves to be INVISIBLE NO MORE!
Parents, guardians, and representatives from organizations supporting Speak Up About ME, accompanythe young patients to the Speak Up About ME events in Washington.
Speak Up About ME also represents young patients who cannot attend due to health, finances or distance, by delivering their testimony via DVD, telephone, e-mails and letters.
Speak Up About ME wants to empower young people and families, friends and others affected by ME/ CFS to advocate for ourselves and others.
WHO? - Young People with ME/CFS and their families.
WHAT? - Speak Up About ME Invisible No More!
WHERE? - Washington DC, Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting.
WHY? - To raise awareness about ME/CFS, that it affects people of all ages, to provide public comment to the CFSAC committee, to be Invisible No More!
WHEN? - Speak Up About ME will take place again at the spring 2012 CFSAC meeting!
Physical presence and providing your public comment in person at the CFSAC has great impact and is empowering. Providing your public comment via DVD is also very powerful. Public comment can be provided by phone and in writing by those who are too sick to attend in person. (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 going to Speak Up About ME?
Advocacy and empowerment we dont 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?
Participating in the CFSAC and/or meeting with Congressional representatives on Capitol Hill are integrated learning experiences (advocacy, public speaking, science, geography, social studies).
Speak Up
About ME participants are part of government in action.
Speak Up About ME welcomes everyone to participate. We especially welcome early onset patients (as well as their families, friends, caregivers, and advocates).
We gladly welcome mentors, volunteers, supporters, donors.
JOIN US to Speak Up About ME, and Invisible No More!
Contact us at Speak Up About ME at gmail dot com (all one word, no
spaces)
Here are links to some of the public comment presented in May and
November 2011 at the CFSAC:
http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201105_lopezmajano.pdf
http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201105_jacksonsuzan.pdf
http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201111_denise.pdf
http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201111_alexander.pdf
INFORMATION FOR DONATIONS
Your contribution(s) help defray costs such as lunches for Speak Up About ME young participants, taxis to/ from Capitol Hill, trading cards, posters, T-shirts, printing, snacks, water, etc. We would very much like to have sufficient funds to help defray lodging expenses for some participants.
Phoenix Rising is accepting earmarked contributions for Speak Up About ME (thank you PR!). By contributing via Phoenix Rising, you can get a tax-deduction. The (snail) mailing address for Phoenix Rising is (please note there will be an unavoidable delay in processing checks):
Phoenix Rising c/o Cort Johnson
1575 Rockcrest Hills Avenue,
Henderson, NV 89052
This page on Phoenix Rising has a PayPal button on the left side:
http://forums.phoenixrising.me/content.php?167
This is what the PayPal page looks like:
https://www.paypal.com/us/cgi-bin/
webscr?cmd=_flow&SESSION=3QuDol5sPEomQB9WVIT0-
nm3GKoj1RGb9C34EB9VW4qOz4hnBawWwC9AgBK&dispatch=5885d80a13c0db1f8e263663d3faee8d4
026841ac68a446f69dad17fb2afeca3
When you have entered your contribution amount (update the amount before entering any other information) and payment information, you get to a page called "Review Your Donation".
On this page, to the left of the amount you are contributing, is a line that says "Add Special Instructions tothe Seller".
Click on "Add Special Instructions to the Seller" to open a comment box.
In that box type in that the contribution is earmarked for Speak Up About ME (please).
Continue to review your transaction details and finalize your transaction.
On the email receipt from PayPal it will show what was typed (For Speak Up about ME please) into the "Add Special Instructions to the Seller" box.
Please contact Phoenix Rising or Speak Up About ME if further clarification is needed.
RSVP now to speakupaboutme @gmail.com
- We are in the process of updating the Speak Up About ME website. Please bear with us. -
http://www.facebook.com/#!/events/297783933617815/?notif_t=event_invite
