Family Resources

Exciting Announcement – UK Family Conference Sunday 3rd July 2022

I am pleased to announce that once again the Family United Network will be hosting this year’s SATB2 UK Family Conference on Sunday 3rd July 2022 from 10am to 4pm.
Unit 5, Britannia Estate, Leagrave Road, Luton LU3 1RJ
We will once again be joined by the Cerebra Team who have been working really hard over the past four years researching into the behaviour that challenges in SAS.
The Cerebra Team will be giving a presentation sharing their latest findings and announcing the next stage of their ongoing research.
Thank you to everyone who has taken part in this so far.
I am also proud to announce that our very own Lead Geneticist Rita Ibitoye will be attending.
Rita is a consultant in Clinical Genetics, based at the NorthWest Thames Regional Genetics Service in London who has an interest in the SATB2 Associated Syndrome (SAS) which has developed over the last 7 years, carrying out a research study on the gene as part of the Deciphering Developmental disorders (DDD study) Complimentary Analysis Project in the UK.
Rita is in the process of setting up the SATB2 MDT and carrying on the hard work from Meena Balasbraman.
I would like to invite a very warm welcome to all SATB2 families and hope you will be able to join us.
This is an amazing opportunity to meet other families, old friends and learn more about what our future holds.
Let’s come together and help our community and grow 💜
If you would like to attend please complete the registration form

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.

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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