Welcome to TalKBG! Hosted by The KBG Foundation: the first patient-led organization for KBG Syndrome. Join us and our guests as we discuss topics on being newly diagnosed, common struggles, available services, IEPs and more! Let’s TalKBG! Follow us: KBG Foundation twitter.com/kbgfdn tiktok.com/@kbgfdn pinterest.com/KBGfdn youtube.com/KBGFoundation linkedin.com/company/kbgfdn
1 hr 1 min
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.
1 hr 3 min
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
14 min
In this episode, KBG Foundation Secretary, Marla Slovin, interviews her son, Grant, about what it's like living with a KBG Sibling.
1 hr 1 min
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.
1 hr 3 min
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
14 min
In this episode, KBG Foundation Secretary, Marla Slovin, interviews her son, Grant, about what it's like living with a KBG Sibling.
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.
28 min
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.
21 min
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.
11 min
In 11 minutes, Annette Maughan, KBG Foundation CEO, discusses what types of seizures may present in KBG Syndrome and their incidence rate.
31 min
Marla and Annette discuss what it's like getting the diagnosis and adapting to having a name for all the symptoms.
11 min
In 11 minutes, Annette Maughan, KBG Foundation CEO, discusses the Rare Disease Day infographics, the data behind them and elephants. The Graphics can be found: KBG Syndrome Population KBG Syndrome Common Traits KBG Key Facts And The Behavior in KBG Syndrome Information Brochure
25 min
KBG Foundation Secretary, Marla Slovin and CEO/Executive Director, Annette Maughan discuss when their boys were diagnosed, how they met and how the Foundation started.
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