Episodios

  • Let's TalKBG: KBG Natural History Study with Matrix CEO Jason Colquitt
    Jul 7 2024

    In this episode learn more about the KBG Foundation Natural History Study with Across Healthcare CEO, Jason Colquitt, and KBG Foundation Chairman of the Board, Glenn Maughan. What makes the Matrix platform special and what features does it have in addition to The Study? #KBGRegistry #KBGNHS #KBGsyndrome #everylinkmatters #KBGfdn #AcrossHealthcare. To enroll in the study visit KBGFoundation.org.

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    1 h y 2 m
  • Let's TalKBG: BEOND Information Evening
    May 4 2023

    On March 23, 2023 the KBG Foundation co-hosted the BEOND Study Information evening with the The Cerebra Network for Neurodevelopmental Disorders about the Behavioural and Emotional Outcomes in Neurodevelopmental Disorders (BEOND) study, which includes information about how people with KBG (or their parents) can be part of this study today. This is the recording of that event. You can find more information about this study on the KBG Foundation or The Cerebra Network websites. The video of this event is also available on our YouTube Channel at: https://youtu.be/yZ7Pj32DLV0

    #KBGresearch #KBGsyndrome #everylinkmatters #KBGfdn #BEONDKBG

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    1 h y 3 m
  • Let's TalKBG: Siblings 2023
    Apr 11 2023
    In this episode, KBG Foundation Secretary, Marla Slovin, interviews her son, Grant, about what it's like living with a KBG Sibling.
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    14 m
  • Let's TalKBG: Siblings
    Apr 10 2022

    In this episode, KBG Foundation Secretary, Marla Slovin, interviews Taylor, Ava and Aiden Maughan about what it's like living with a KBG Sibling.

    View this episode on YouTube.

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    28 m
  • Let's TalKBG: Siblings
    Apr 10 2022

    In this episode, KBG Foundation Secretary, Marla Slovin, interviews Taylor, Ava and Aiden Maughan about what it's like living with a KBG Sibling.

    View this episode on YouTube.

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    Menos de 1 minuto
  • Let's TalKBG: 8 Tips to Help You Take Charge of Your Diagnosis
    Mar 27 2022

    KBG Foundation Secretary, Marla Slovin, and CEO, Annette Maughan present eight (8) rational tips to help you take charge of your diagnosis.

    Print version available online.

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    21 m
  • TalKBG: ANKRD11 in 11 - Seizures in KBG Syndrome
    Mar 19 2022

    In 11 minutes, Annette Maughan, KBG Foundation CEO, discusses what types of seizures may present in KBG Syndrome and their incidence rate.

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    12 m
  • Let's TalKBG Episode 3: Living with KBG
    Mar 12 2022

    Marla and Annette discuss what it's like getting the diagnosis and adapting to having a name for all the symptoms.

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    31 m