SYNGAP1 Parent/SRF Director Intro: Kali & LJ, October 2020

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  • Опубликовано: 13 сен 2024
  • Meet Kali, LJ and their daughter Kai who has a SynGAP mutation. In this video you can learn about their family, SYNGAP1 (SynGAP Syndrome), and the exciting work SRF is doing to gather patient data with Ciitizen in order to help Clinical Trials happen faster.
    ► Families with a SYNGAP1 diagnosis can participate at: www.ciitizen.c...
    ► Learn more about SynGAP research at: www.syngaprese...
    ► Follow SynGAP Research Fund on twitter: / curesyngap1
    ► Like us on Facebook: / curesyngap1
    ► Connect with Syngap Global Network for family support (Global):
    / syngapglobalfamilysupport
    ► Connect with us for family support (North America):
    / syngapresearchfund

Комментарии • 7

  • @18matts
    @18matts 3 года назад +2

    Ufd brought me here. Keep on fighting guys! Your amazing parents!

  • @hthealthgroup3675
    @hthealthgroup3675 2 года назад +1

    Thanks Kali and LJ for sharing your story about your beautiful daughter. It seems really similar to our story for our daughter Tashy who's now 18. I wish we'd known about our SYNGAP1 diagnosis earlier - we've only just found out. It would have been very helpful and so much less lonely a journey! Tashy loves the water too by the way - I've always called her a mermaid.

  • @Beata-.-
    @Beata-.- 3 года назад

    What a beautiful video... thank you

  • @bethanyworth8850
    @bethanyworth8850 3 года назад

    Love LOVE TO ALL OF YOU💙💜💚

  • @loriholmes2398
    @loriholmes2398 8 месяцев назад

    Hello! Our 16 year old son was diagnosed with Syngap in 2020. I would love to connect with you!

  • @thejasminetiara
    @thejasminetiara 3 года назад

    Awww she’s beautiful! I’d love to connect with this family. My son has Syngap1 and he’s 5.

    • @CureSYNGAP1
      @CureSYNGAP1  3 года назад

      Hi Jasmine, We will gladly connect you with them. You can send us your email address at info@syngapresearchfund.org and we can forward it along to this dear family. Be well.