Conference Programme – Online

SSBP Online Conference, 2023

Programme for SSBP 25th Virtual Research Symposium

14-15 September 2023, Virtual Symposium

Last updated on 08/09/2023

**** A NOTE ON TIMEZONES ****

The SSBP has members around the globe, and so we have done our best to ensure that everyone will be able to attend a range of live sessions during their daytime. All talks will be pre-recorded and will be available on the website for 30 days after the conference.

We have given this schedule in a range of timezones.

If you need to convert the times, please be aware that British Summer Time will still be active in the UK in September.

Live events in Sessions 1 and 3 are broadly aimed at registrants from Australasia, Asia, Europe and Africa

Live events in Sessions 2 and 4 are broadly aimed at registrants from North and South America, Europe and Africa

USA Pacific Time
(UTC-7)

USA Eastern Time
(UTC-4)

UK BST
(UTC+1)

CEST
(UTC+2)

Australian Eastern Time (UTC+10)

Venue

00:00

03:00

08:00

09:00

17:00

KEYNOTE: Jo Van Herwegen
Improving Educational Outcomes for Young People with Williams Syndrome: From Theory to Practice (and Back Again)

All talks are pre-recorded and can be accessed from the Website

00:30

03:30

08:30

09:30

17:30

3 x Free Communications
Jente Verbesselt – Clinical features and developmental trajectories in school-aged children with 16p11.2 deletion

Catherine Franklin – Down Syndrome Regression Disorder

Elizabeth Elliott – The Face of Fetal Alcohol Spectrum Disorder in Australia

Website

01:00

04:00

09:00

10:00

18:00

Live Discussion (Chair: Honey Heussler):

– Welcome from the Organising Committee

– Q/A (Van Herwegen, Verbesselt, Franklin, Elliott)

Zoom

01:35

04:35

09:35

10:35

18:35

Break (15 min)

01:50

04:50

09:50

10:50

18:50

KEYNOTE: Dawn Adams
Understanding Mental Health and Well-Being in the Context of Neurodiversity

Website

02:20

05:20

10:20

11:20

19:20

2 x Free Communications

Jessica Hughes – A parent-led intervention to reduce anxiety in autistic children with severe to profound intellectual disabilities: current data from the LADDERS proof-of-concept study

Mirthe Klein Haneveld – Improving guidelines for individuals with rare genetic neurodevelopmental disorders: a systematic review and critical appraisal of existing guidelines

Website

02:40

05:40

10:40

11:40

19:40

Live Discussion (Chair: Jane Waite):

Q/A (Adams, Hughes, Klein Haneveld)

Zoom

03:05

06:05

11:05

12:05

20:05

Break (15 min)

03:20

06:20

11:20

12:20

20:20

The Pat Howlin Prize Lecture – Laura Roche

Enhancing Expressive Communication Using AAC: A Case Study of One Boy with 22q11.2 Deletion Syndrome

Website

03:40

06:40

11:40

12:40

20:40

Live Discussion (Chair: Pat Howlin):

-Q/A (Roche)

-Panel Discussion: Why is it so difficult to do intervention research involving individuals with genetic conditions?

Zoom

USA Pacific Time
(UTC-7)

USA Eastern Time
(UTC-4)

UK BST
(UTC+1)

CEST
(UTC+2)

Australian Eastern Time (UTC+10)

Venue

09:00

12:00

17:00

18:00

02:00
(Friday)

The Tom Oppé Distinguished Lecture

KEYNOTE: Mustafa Sahin
Collaborative Translational Studies in Rare Neurogenetic Diseases

All talks are pre-recorded and can be accessed from the Website

09:30

12:30

17:30

18:30

02:30

3 x Free Communications
Nola Chambers – Development of consensus recommendations for the identification and treatment of TSC-Associated Neuropsychiatric Disorders (TAND)

Agnies van Eeghen – Behavioural outcomes of treatment with cannabidiol oral solution in individuals with seizures associated with tuberous sclerosis complex: design of an ongoing phase 4 trial (EpiCom)

Nadja Bednarczuk – Behavioural and Developmental characteristics of SYNGAP1-related intellectual disability

Website

10:00

13:00

18:00

19:00

03:00

Live Discussion (Chair: Anna Jansen):

Welcome from the Organising Committee

Q/A (Sahin, Chambers, van Eeghen, Bednarczuk)

Zoom

10:35

13:35

18:35

19:35

03:35

Break (15 min)

10:50

13:50

18:50

19:50

03:50

KEYNOTE: Giacomo Vivanti
Phenotypic Overlap Between Autism, Williams Syndrome and Angelman Syndrome

Website

11:35

14:35

19:35

20:35

04:35

3 x Free Communications
Tally Tafla – Critical items of CBCLs in a Brazilian sample of Williams and Down syndrome individuals

Nicole Tartaglia – The eXtraordinarY Babies Study: Utilization of Early Intervention Therapies in 289 Children with a Prenatal Diagnosis of Sex Chromosome Aneuploidy (XXY, XYY, Trisomy X) and Relationship of Speech Therapy to Speech-Language Outcomes at 36 months of age

Talia Thompson – Anxiety in Turner syndrome: Engaging community to address barriers and facilitators to diagnosis and care

Website

12:05

15:05

20:05

21:05

05:05

Short Break (10 min)

12:15

15:15

20:15

21:15

05:15

Live Discussion (Chair: Randi Hagerman):

Q/A (Vivanti, Tafla, Tartaglia, Thompson)

Zoom

USA Pacific Time
(UTC-7)

USA Eastern Time
(UTC-4)

UK BST
(UTC+1)

CEST
(UTC+2)

Australian Eastern Time (UTC+10)

Venue

00:00

03:00

08:00

09:00

17:00

Live Poster Session A (Chair: Johan Lundin Kleberg)

Browse our interactive poster gallery, and discuss posters with presenting authors in video chat

Gather

00:45

03:45

08:45

09:45

17:45

Break (15 min)

01:00

04:00

09:00

10:00

18:00

KEYNOTE: Bruno Falissard
Did We Take the Right Train in Promoting the Concept of ‘Neurodevelopmental Disorders’?

Website

01:30

04:30

09:30

10:30

18:30

3 x Free Communications
Honey Heussler – An Open-Label Trial Assessing Short- and Long-Term Tolerability and Efficacy of ZYN002 (Cannabidiol) Administered as a Transdermal Gel to Children and Adolescents with 22q11.2 Deletion Syndrome (INSPIRE)

Nadia van Silfhout – PROM4RARE: Giving a voice to individuals with rare genetic neurodevelopmental disorders

Lauren Shelley – Associations between executive functioning, intolerance of uncertainty and behaviours that challenge in SATB2-associated syndrome

Website

02:00

05:00

10:00

11:00

19:00

Live Discussion (Chair: Honey Heussler)

Q/A (Falissard, Heussler, van Silfhout, Shelley)

Zoom

02:30

05:30

10:30

11:30

19:30

Break (15 min)

02:45

05:45

10:45

11:45

19:45

Presentation introducing SSBP 2024 – in Bali, Indonesia

Zoom

03:00

06:00

11:00

12:00

20:00

SSBP AGM

Zoom

USA Pacific Time
(UTC-7)

USA Eastern Time
(UTC-4)

UK BST
(UTC+1)

CEST
(UTC+2)

Australian Eastern Time (UTC+10)

Venue

09:00

12:00

17:00

18:00

02:00

(Saturday)

Live Poster Session B (Chair: Randi Hagerman)

Browse our interactive poster gallery, and discuss posters with presenting authors in video chat

Gather

09:45

12:45

17:45

18:45

02:45

Break (15 min)

10:00

13:00

18:00

19:00

03:00

The Leclezio-De Vries Prize Lecture – Jeanne Wolstencroft

Autism Picture Tool: Children and young people’s views on consent

Website

10:15

13:15

18:15

19:15

03:15

Live Discussion (Chair: Petrus de Vries):

-Q/A (Wolstencroft)

-Round Table Discussion: Towards socially responsive and participatory research around the globe

Zoom

10:50

13:50

18:50

19:50

03:50

Break (15 min)

11:05

14:05

19:05

20:05

04:05

KEYNOTE: Walter Kaufmann

Development of Targeted Treatments for Rett Syndrome

Website

11:35

14:35

19:35

20:35

04:35

4 x Free Communications
Randi Hagerman – Open Label Trial of Sulforaphane in FXTAS

Dejan Budimirovic – High frequency of neuropsychiatric disorders and a need for treatment in patients with FXAND linked to FMR1 gene premutation carriers

Federica Alice Maria Montanaro – Fragile X Syndrome and FMR1 premutation: results from a survey on associated conditions and treatment priorities in Italy

Kayla Smith – The Relationship between Autism Characteristics, Intolerance of Uncertainty, and Anxiety in Fragile X Syndrome

Website

12:15

15:15

20:15

21:15

05:15

Short break (5 min)

12:20

15:20

20:20

21:20

05:20

Live Discussion (Chair: Randi Hagerman):

Q/A (Kaufmann, Hagerman, Budimirovic, Montanaro, Smith)

Zoom

12:55

15:55

20:55

21:55

05:55

Thanks and Goodbyes – Organising Committee

Zoom