1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
Discuss the article on the Forums.

Article: Born to Run: NJCFSA Rocks New Jersey

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 20, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    650
    Likes:
    1,017
  2. Greggory Blundell

    Greggory Blundell *****

    Messages:
    109
    Likes:
    0
    New Jersey, USA
    Living here in Jersey, I've been to a couple NJCFSA meetings. They were coordinated and attended by a savvy group of fellow patients who were eager to provide insight and direction and compassion even as they struggled with their own illnesses. I would have gone to more but the distance was too great. I have nothing for admiration for them and believe they represent a fine model. I even retained my legal council because of their influence.
     
  3. kit

    kit

    Messages:
    81
    Likes:
    0
    USA
    Speaking of NJCFSA, does anyone know why Ken Friedman's 2009 CFSAC testimony was pulled from youtube? His testimony was so powerful, and he risked losing his position to give that testimony. Does anyone know what happened to him?
     
  4. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Glad to hear it Greggory. Somehow they've managed to do alot of things none of the few other state organizations have been able to.

    Ken has been an ardent spokesman for CFS for many years now. I did a 3 part interview with him several years ago. http://www.aboutmecfs.org/Int/IntFriedmanPtINov07.aspx. He's worked hard with a number of organizations and is now particularly involved with Pandora I believe. I did hear that he ran into some trouble at his University because of his fight for us (and his daughter). I don't know why his video would have been pulled unless perhaps he needed it pulled. I hope he's doing OK.
     
  5. _Kim_

    _Kim_ Guest

    kit, I think this might be the video of Ken Friedman you are looking for. If not, it's somewhere else on this YouTube Channel (look on their playlist).

    [video=youtube;t5OAD8PTics]http://www.youtube.com/watch?v=t5OAD8PTics[/video]
     
  6. _Kim_

    _Kim_ Guest

    Hi Greggory,

    NJCFSA has no support group for Middlesex County, so I've been toying with the idea of getting one going. What county are you in?
     
  7. Greggory Blundell

    Greggory Blundell *****

    Messages:
    109
    Likes:
    0
    New Jersey, USA
    I am right on the border of Warren and Sussex, not far from the Gap. Let me know if I can help.
     
  8. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Thanks for the video - Ken does not pull his punches. He used to be on the CFSAC as well.
     
  9. kit

    kit

    Messages:
    81
    Likes:
    0
    USA
    Yes, that's it. I suggested him as a possible interview subject for the film "What about ME?" but then couldn't find the video link to forward it on. Thanks _Kim_.
     
  10. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    1,492
    Likes:
    1,448
    I am 20 minutes outside of Joisey..so this is exciting! I will let my fellow Jersey CFS friends know!
     
  11. Greggory Blundell

    Greggory Blundell *****

    Messages:
    109
    Likes:
    0
    New Jersey, USA
    Twenty minutes outside of Jersey means you're within our gravitational pull. :) Where are you? I will try to direct you to the closest group. It may be far; it is for me. But they are good people.
     
  12. Dolphin

    Dolphin Senior Member

    Messages:
    6,865
    Likes:
    6,131
    Belated thanks for this, Cort. Lots of ideas here for other groups.
     

See more popular forum discussions.

Share This Page