Let's TalKBG!
Let's TalKBG!
KBG Foundation
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
Let's TalKBG: BEOND Information Evening
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
May 4, 2023
1 hr 3 min
Let's TalKBG: Siblings 2023
In this episode, KBG Foundation Secretary, Marla Slovin, interviews her son, Grant, about what it's like living with a KBG Sibling.
Apr 11, 2023
14 min
Let's TalKBG: Siblings
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.
Apr 10, 2022
28 min
Let's TalKBG: Siblings
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.
Apr 10, 2022
Let's TalKBG: 8 Tips to Help You Take Charge of Your Diagnosis
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.
Mar 27, 2022
21 min
TalKBG: ANKRD11 in 11 - Seizures in KBG Syndrome
In 11 minutes, Annette Maughan, KBG Foundation CEO, discusses what types of seizures may present in KBG Syndrome and their incidence rate.
Mar 19, 2022
11 min
Let's TalKBG Episode 3: Living with KBG
Marla and Annette discuss what it's like getting the diagnosis and adapting to having a name for all the symptoms.
Mar 12, 2022
31 min
TalKBG: ANKRD11 in 11 - Rare Disease Day
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 PopulationKBG Syndrome Common TraitsKBG Key FactsAndThe Behavior in KBG Syndrome Information Brochure
Mar 5, 2022
11 min
Let's TalKBG Episode 1: Introductions
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.
Feb 28, 2022
25 min