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The SATB2 Gene Trust UK was established to enhance the lives of those affected by SATB2-associated syndrome by providing emotional and educational support, and by raising awareness and supporting research.

DONATE

The SATB2 Gene Trust UK was established to enhance the lives of those affected by SATB2-associated syndrome by providing emotional and educational support, and by raising awareness and supporting research.

Exciting Announcement – UK Family Conference Sunday 4th June 2023

We welcome you to join us on this, our 5th Family Conference which is being held at THOMLEY in Worminghall Buckinghamshire

https://thomley.org.uk/

Time – 10am to 3.30pm

SATB2 Gene Trust UK Family Conference Day SUNDAY 4TH JUNE 2023

Place – THOMLEY
Menmarsh Rd, Worminghall HP18 9JZ

https://thomley.org.uk/

Time – 10am to 3.30pm

We would love you to join us on this, our 5th Family Conference.
Thomley has plenty for wonderful safe space both inside and out for all the family.
We will be joined by the Cerebra Team who will be presenting their latest findings from their ongoing research into the behaviours within SATB2 Syndrome.
Our UK Geneticist Rita Ibitoye will also be joining us on the day for you to ask questions and discuss her Multidisciplinary Clinic.

There is a cafe on site where you can purchase  hot & cold food or your welcome to bring your own pack up.

Your whole family is welcome, siblings, Grandparents and carers. If you would like bring a carer/support for your SATB2 child/adult to help you on the day you are very welcome to.
There is plenty of space and things to do including a soft play area, sensory room, teenage den, art & craft room, individual play rooms filled with wonderful toys and a wonderful outside play area.
Thomley has three camping pods on site which can be hired in advance, please see their website if you are interested.

We can not wait to see you there, to keep building our family support network, finding friendships and sharing information.

In order for us to make necessary arrangements please complete the google form.
https://forms.gle/2qoVPmQXYKyViWfB7

If you have any queries please do contact me at mariasatb2uk@gmail.com

SATB2 Information Sheets for Families and Physicians

We are excited to share these official information sheets about SATB2 associated syndrome.

Families Download this version as a resource to share with your medical experts clinical team or your paediatrician.

Physicians, therapists, and clinicians –  Download this version to see the common features, information about diagnosing the condition, as well as recommended evaluations and treatments.

  • Severe speech and language anomalies
  • Abnormalities of the palate
  • Teeth abnormalities
  • Behaviour issues with or without bone or brain anomalies
  • Onset before age 2

SATB2 Awareness Day

August 22 marks an amazing opportunity for SATB2-associated syndrome (SAS), the SATB2 Gene Foundation and the SATB2 Gene Trust UK. Because this day is one where we can all come together to spread the word about SAS.

SATB2 UK Family Conference

The SATB2 UK family conference is an annual event for the families to come together to share information, ideas, and experiences and to form long lasting friendships.

Family stories

“I like that with testing and new diagnosis happening all the time, we will get families with SAS children, well into their 40’s who approach the groups looking for information and answers on their recent diagnosis, without realising that their own expertise having managed their children will provide more help for those of us with younger SAS families. So please remember that with this condition only being first described in medical literature in 1989, we are all new at this and we are all learning.”

Edwin Hodges – June 2020

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