Let's TalKBG! | Podcast on RSS.com

Let's TalKBG!

by KBG Foundation

Non-Profit Society & Culture

Season 3

Let's TalKBG: KBG Natural History Study with Matrix CEO Jason Colquitt

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.

Season 2

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

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.

Season 1

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.

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.

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.

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.

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.

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 Population KBG Syndrome Common Traits KBG Key Facts And The Behavior in KBG Syndrome Information Brochure

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.