Phoenix Rising: The Gift That Keeps on Giving All Year Long
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all ...
Discuss the article on the Forums.

Support teenagers new advocacy video channel! Thanks

Discussion in 'Action Alerts and Advocacy' started by Astrea, Jan 31, 2012.

  1. Astrea

    Astrea

    Messages:
    10
    Likes:
    7
    Atlanta Metro
    Hello. Newbie here. I have a 17 year old daughter that has been sick with CFS for over one year. She also has POTS and maybe EDS. She's started a video channel to educate her friends about CFS/ME.

    It started out when she got tired of explaining to her classmates why she was absent a lot. So she made a video and posted it on her facebook.
    It was her very first video. http://www.youtube.com/watch?v=_TXRidx-gXQ

    http://www.youtube.com/watch?v=iuFOmJ7RZco

    This link is to a video that is a promo for her next video on the Epstein Barr Virus. 26 seconds
    http://www.youtube.com/watch?v=gLhoS3W_fi8

    Then her report on Epstein Barr will be posted this week.

    Please support her. She wants to major in neuroscience. She often gets questioned about her illness because she doesn't look sick. She's trying to get the word out . She wants to get rid of the stigma of CFS/ME.

    Thanks for listening. Feel free to share her reports and email her with any information, corrections or ideas through youtube.

    Astrea





    guitar.jpg
     
    L'engle likes this.
  2. Astrea

    Astrea

    Messages:
    10
    Likes:
    7
    Atlanta Metro
    Hello. Thank you for you support.

    Lizzie will be uploading more video's very soon.She's started a video channel to educate her friends about CFS/ME.

    Her story starts out like this...
    It started out when she got tired of explaining to her classmates why she was absent a lot. So she made a video and posted it on her facebook.

    It was her very first video. http://www.youtube.com/watch?v=_TXRidx-gXQ

    http://www.youtube.com/watch?v=iuFOmJ7RZco

    This link is to a video that is a promo for her next video on the Epstein Barr Virus. 26 seconds
    http://www.youtube.com/watch?v=gLhoS3W_fi8

    Then her report on Epstein Barr will be posted this week.

    Please support her. She wants to major in neuroscience. She often gets questioned about her illness because she doesn't look sick. She's trying to get the word out . She wants to get rid of the stigma of CFS/ME.

    Thanks for listening. Feel free to share her reports and email her with any information, corrections or ideas through youtube.

    Astrea
     
    *GG* likes this.
  3. LilacGardenia

    LilacGardenia

    Messages:
    71
    Likes:
    41
    Thanks for posting this and thanks to her for making these videos! I'm also a teen and close to her age (I'm a college freshman) and can relate to how she feels about CSF/ME being "invisible" and having to explain to friends, or even function as a student. It's difficult... no doubt about that. The quote I live by is "Success is to be measured not so much by the position one has reached in life as by the obstacles which he/she has overcome" - Booker T. Washington

    So true, and it helps me get through those hard moments. I wish her the best... I'm actually a Neuropsychology and Anthropology double major and a science and psychology nerd... neuroscience is a very neat area of study.

    Keep up the great work! :thumbsup:

    All the best!
    -Lilac
     
    *GG* likes this.
  4. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    347
    Southern USA
    I am so glad she has done the videos so her friends and others can learn more. She does a great job!
     
  5. Boule de feu

    Boule de feu Senior Member

    Messages:
    1,115
    Likes:
    66
    Ottawa, Canada
    Good job! :thumbsup:

    Very informative. It's too bad she is so young and have to go through this.
    Hang in there!
     
    *GG* likes this.
  6. *GG*

    *GG* Senior Member

    Messages:
    6,167
    Likes:
    4,773
    Concord, NH
    I remember seeing this a while back. She/you should consider going to a CFSAC meeting. She puts a good face/articulate/intelligent on this disease and could probably help herself and many others with her advocacy!

    GG
     
  7. Astrea

    Astrea

    Messages:
    10
    Likes:
    7
    Atlanta Metro
    Dear GG,
    What a honor that would be for her. If you have any information on the organizer of the CFSAC meeting, private message me. Please feel free to comment on her youtube page and make that suggestion to her personally. (I'm pretty sure you can email her through youtube. Since I am her mother, she feels I am bias and my opinion doesn't hold much weight. Thanks!
     
    *GG* likes this.
  8. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447
    I am planning the spring Speak Up About ME event - hopefully to coincide with CFSAC in Washington DC - and I welcome help, participants, etc.
    We again plan to attend CFSAC, have lunch together (bonding in person with others with ME/CFS is a novel experience for many) and who knows what else we might do.....
    Participation by early onset patients and families is especially welcome as we want to empower young people and their families so that we get the treatments and services we all deserve.
    Participation in person is especially powerful, public comment to the CFSAC by DVD or telephone are also very powerful.
    PM me or contact me at speakupaboutme@gmail.com. Speak Up About ME! Let's do it!



    Please note that the Speak Up About ME website is way out of date. Our webmaster has been too sick to work on it. We are trying to find a way around this.... Please bear with us.
     
    justinreilly, Christopher and *GG* like this.
  9. *GG*

    *GG* Senior Member

    Messages:
    6,167
    Likes:
    4,773
    Concord, NH
    Looks like you recieved a response. I am willing to donate money and perhaps even travel and would read a persons testimony?

    GG
     
    Denise likes this.
  10. *GG*

    *GG* Senior Member

    Messages:
    6,167
    Likes:
    4,773
    Concord, NH

See more popular forum discussions.

Share This Page