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: 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 (https://kbgfoundation.org/kbg-syndrome-registry).
4 May 2023
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 (https://www.facebook.com/cerebranetwork?__cft__[0]=AZU7JUkjtJFgtg45odazXbYy60cxL94-sh_W4da9L9pPngu8RCj7Og9pItmj3_DmFr5ZDeO2DIVP9ZQpzl5ViUXcAoyo-7Pxc7eofjA3SLqmBhfk82qlXrIrmVxRLJzFz4hDWLjpTM50E4e81sVJBaN0&__tn__=-]K-R) 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 (https://www.kbgfoundation.com/kbg-syndrome-beond.html)or The Cerebra Network (https://www.cerebranetwork.com/beond-kbg) websites. The video of this event is also available on our YouTube Channel at: https://youtu.be/yZ7Pj32DLV0 (https://youtu.be/yZ7Pj32DLV0)
#KBGresearch (https://www.facebook.com/hashtag/kbgresearch?__eep__=6&__cft__[0]=AZU7JUkjtJFgtg45odazXbYy60cxL94-sh_W4da9L9pPngu8RCj7Og9pItmj3_DmFr5ZDeO2DIVP9ZQpzl5ViUXcAoyo-7Pxc7eofjA3SLqmBhfk82qlXrIrmVxRLJzFz4hDWLjpTM50E4e81sVJBaN0&__tn__=*NK-R) #KBGsyndrome (https://www.facebook.com/hashtag/kbgsyndrome?__eep__=6&__cft__[0]=AZU7JUkjtJFgtg45odazXbYy60cxL94-sh_W4da9L9pPngu8RCj7Og9pItmj3_DmFr5ZDeO2DIVP9ZQpzl5ViUXcAoyo-7Pxc7eofjA3SLqmBhfk82qlXrIrmVxRLJzFz4hDWLjpTM50E4e81sVJBaN0&__tn__=*NK-R) #everylinkmatters (https://www.facebook.com/hashtag/everylinkmatters?__eep__=6&__cft__[0]=AZU7JUkjtJFgtg45odazXbYy60cxL94-sh_W4da9L9pPngu8RCj7Og9pItmj3_DmFr5ZDeO2DIVP9ZQpzl5ViUXcAoyo-7Pxc7eofjA3SLqmBhfk82qlXrIrmVxRLJzFz4hDWLjpTM50E4e81sVJBaN0&__tn__=*NK-R) #KBGfdn #BEONDKBG (https://www.facebook.com/hashtag/kbgfdn?__eep__=6&__cft__[0]=AZU7JUkjtJFgtg45odazXbYy60cxL94-sh_W4da9L9pPngu8RCj7Og9pItmj3_DmFr5ZDeO2DIVP9ZQpzl5ViUXcAoyo-7Pxc7eofjA3SLqmBhfk82qlXrIrmVxRLJzFz4hDWLjpTM50E4e81sVJBaN0&__tn__=*NK-R)
11 Apr 2023
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.
10 Apr 2022
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. (https://youtu.be/_IMsdj0ua6A)
27 Mar 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. (https://www.kbgfoundation.com/8-tips-to-taking-charge.html)
19 Mar 2022
TalKBG: ANKRD11 in 11 - Seizures in KBG Syndrome
In 11 minutes, Annette Maughan, (https://www.kbgfoundation.com/)KBG Foundation (https://www.kbgfoundation.com/) CEO, discusses what types of seizures may present in KBG Syndrome and their incidence rate.
12 Mar 2022
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.
5 Mar 2022
TalKBG: ANKRD11 in 11 - Rare Disease Day
In 11 minutes, Annette Maughan, (https://www.kbgfoundation.com/)KBG Foundation (https://www.kbgfoundation.com/) CEO, discusses the Rare Disease Day infographics, the data behind them and elephants.
The Graphics can be found:
KBG Syndrome Population (https://www.facebook.com/KGBFdn/posts/3217529905144772)
KBG Syndrome Common Traits (https://www.facebook.com/KGBFdn/posts/3217653108465785)
KBG Key Facts (https://www.facebook.com/KGBFdn/posts/3217786468452449)
And
The Behavior in KBG Syndrome Information Brochure (https://nebula.wsimg.com/0459adb5763c0099d9b070a195ae04f0?AccessKeyId=F45FA02690DBBB1D6A96&disposition=0&alloworigin=1)
28 Feb 2022
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.
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