Family Resources

Closed Family Support Facebook Group

The SATB2-associated syndrome Family Support Group (closed Facebook group) is a highly active group of family members of individuals with SATB2-associated syndrome. Our SATB2-associated syndrome Family Support Group has daily communication on topics such as medical, developmental, and behavioural issues. Additionally, we share resources with each other, and importantly, we also share triumphs, which we call SAS Smiles. Members include families from all over the United States and Europe, as well as Australia and Canada.  Parents of individuals with SATB2-associated syndrome are encouraged to request access to join the group by clicking here.

SATB2 Syndrome (2q33.1) – UK Parents & Carers Facebook Group

This Facebook group is for parent and carers in the UK who are affected by SATB2 and would like to connect with other families, share information and receive UK base updates.

Parents of individuals with SATB2-associated syndrome are encouraged to request access to join the group by clicking here.

IMPORTANT UPDATE – 2020 SATB2 FAMILY CONFERENCE POSTPONED

The 2020 SATB2-Associated Syndrome Conference to be held in Bedfordshire (UK) July 12, 2020 has been POSTPONED to summer 2021 due to concerns surrounding COVID-19.

Updates for the next family conference will be posted here.

SATB2 UK family conference

On 7 July, 2019 the Families United Network once again hosted our annual SATB2 UK family conference, now in its third year.

The conference was attended by lots of families which included many siblings, grandparents and a parent who travelled all the way from the Netherlands.

We were joined once again by the psychologist team from the Cerebra Project who gave two presentations, the first was an overview of challenging behaviour from a clinical perspective, and the second was a summary of their research findings from the online behaviour study relating to the different behaviour issues within SATB2 syndrome.

They were also able to hold individual clinical consults for anyone who wished to discuss matters.

Our leading UK geneticist Meena Balasubramanian, who is also a member of the SATB2 Medical Advisory Board attended to discuss her plans for a multi-disciplinary clinic and meet with families.

There were several handouts on the day which complied of a SATB2 Patient Support Group meeting 2019 survey relating to the Multi-disciplinary clinic, the SATB2 Gene Trust UK parent Volunteer Interest Survey and an announcement update from the SATB2 Gene Foundation.

We were able to roll out the plans for the start of the UK Charity and using the survey, we were able to converse for volunteers and the response was great.

It was wonderful to see so many new families as well as familiar faces. It was lovely to see children recognise each other, play and form friendships. Parents were able to chat, relax and share stories and experiences. Even before the day parents had spoken of how their children were looking forward to it.

One moment which really stood out was when everybody sat down together to have lunch as a communal group in the café area. The atmosphere felt like one of just that, a real community.

We would like to thank the SATB2 Gene Foundation who sponsored the event and hope to see you at the next one.

How we have grown

Being able to meet another SATB2 family in person is incredibly special. There is an instant connection when meeting another parent or sibling on the same journey, as if you have known then for years. Further, it is powerful and amazing to see the bond individuals with SATB2 develop with each other. It is a memorable experience, which allows SATB2 families to develop long-lasting bonds and additional support networks.

We want to help foster these personal connections during the whole year.

SATB2 mum’s weekend getaway - Oct 2019

SATB2 mum’s weekend getaway – Oct 2019

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