Forum Replies Created

  • gian-piero

    Member
    July 18, 2019 at 10:21 am in reply to: Etravirine…

    Dear all, I invite you to join the Telegram chat group on Etravirine, with more than 110 participants:
    https://t.me/joinchat/J682xhFAMTiMpCo3Of5PXQ

    Also, if you are already on FB you can join the Etravirine for FA group:
    https://www.facebook.com/groups/2601479636546565/

    See you soon!

    GP 😉

  • gian-piero

    Member
    July 18, 2019 at 10:20 am in reply to: Etravirine…

    Dear all, I invite you to join the Telegram chat group on Etravirine, with more than 110 participants:
    https://t.me/joinchat/J682xhFAMTiMpCo3Of5PXQ

    Also, if you are already on FB you can join the Etravirine for FA group:
    https://www.facebook.com/groups/2601479636546565/

    See you soon!

    GP 😉

  • gian-piero

    Member
    April 29, 2019 at 7:50 am in reply to: Etravirine…

    Dear all, following Gunnhild Lystad’s suggestion, yesterday afternoon I have created a Facebook group dedicated to sharing info and experiences about Etravirine. The group is currently closed, not public. In order to be admitted new members have to respond to three questions during the subscription process. Those of you who are already on FB and would like to join the “Etravirine for FA” group can go to this link:

    https://m.facebook.com/groups/2601479636546565?ref=share

    Normally, if I didn’t make any mistake, before seeing any posts and participating you should be requested to subscribe. Please let me know if everything is ok.
    Also, since this will be an international group, posts will be preferably in English, but as it happens in the BabelFAmily FB group, all languages can be used and translations from English are welcome.
    This new FB group is open to those people who are interested about the use of Etravirine for FA and also to the patients or caregivers who want to share their experience with it.
    All participants make a commitment not to share the discussion or information content without the consent of the person who made the comment or shared the information.
    We welcome good discussions about all sides of a topic, but remember to be friendly and polite. Hurtful intents, bullying and scaremongering are not welcome and will automatically lead to be blocked and banned from the group.

  • gian-piero

    Member
    March 24, 2019 at 1:42 am in reply to: Etravirine…

    Go Lynn go!!!

  • gian-piero

    Member
    March 21, 2019 at 8:29 pm in reply to: Etravirine…

    Last and very encouraging update from Ilva’s blog. Must read.
    https://lonesomesparkle.wordpress.com/2019/03/21/8-weeks-with-etravirine/

  • gian-piero

    Member
    March 21, 2019 at 5:20 pm in reply to: Etravirine…

    An interesting observation I just read in Dr. Testi’s study:
    ”Importantly, we did not observe any correlation between the efficacy of etravirine and the presence or lenghth of GAA repeats.”
    Before reading it I feared that Etravirine might work well only in people with a low number of triplets. Now I feel more confident that also patients with many triplets can benefit from Etravirine.

  • gian-piero

    Member
    March 21, 2019 at 3:00 pm in reply to: Etravirine…

    This is what a participant from Spain in his fourties and with LOFA said today in our whatsapp chat group dedicated to Etravirine:

    “The most relevant effects I am feeling after one month and two days on Etravirine are: excess energy, better control of posture and more agility.”

  • gian-piero

    Member
    February 24, 2019 at 6:15 am in reply to: Etravirine…

    Dear Ilva, thanks for te wonderful news!!!

  • gian-piero

    Member
    February 21, 2019 at 5:31 am in reply to: Etravirine…

    Hi Chris,

    Ilva’s mother has noticed a big improvement in dysarthria and energy level.

  • gian-piero

    Member
    February 20, 2019 at 8:30 am in reply to: Etravirine…

    Hi Girls and Guys,

    we have created a whatsapp chat group as a secondary tool to share any news or experience on this topic.
    If you want to join it please contact me first on Messenger through Facebook.
    https://www.facebook.com/gianpiero.sommaruga

    Hugs,

    GP 😉

  • gian-piero

    Member
    March 14, 2019 at 3:29 am in reply to: Etravirine…

    Sorry Sandrina,

    I mistakenly read March 12 instead of April 12…

  • gian-piero

    Member
    March 14, 2019 at 3:26 am in reply to: Etravirine…

    Hi Sandrine,

    any news about your appointment with your neurologist? Please let us know, thanks!

  • gian-piero

    Member
    February 21, 2019 at 4:53 am in reply to: Etravirine…

    Hi Shandra,

    this blog and the WhatsApp chat group are not in competition. They are complementary. No doubt any relevant update regarding Etravirine for FA patients will be shared here as well.