About Us
Vision & Aim
The Trust aims to promote awareness of Syngap1, through both education & Research and to support families of children with Syngap1.
Trustees
The Trust shall be ran by three unpaid volunteers, who shall be adults that do not hold any Trust assets.
The Trustees shall be agreed and recorded at Annual General Meetings.
The Trustees assess applications for money from research bodies, fiscal sponsors and individuals, and distribute amounts based on available funds in accordance with the Objects of this Constitution.
The Trustees shall appoint a Treasurer & Secretary and may also appoint Web design & a family liaison officer.
Upon one year's of accounts the Trustees will apply for and maintain Registration of the Trust with HM Government Charity Commission, and apply for Gift Aid.
Trustees will keep records of the Affairs of the Trust that are discussed during meetings.
Treasurer
The Treasurer monitors and distributes voluntary income in agreement with the Trustees and in accordance with the Objects of the Trust..
The treasurer will maintain Accounts of income and expenditure, through a bank account in the name of the BTG UK.
Awareness
The Trust promotes awareness of Syngap1 through any legal means it chooses.
Promoting awareness of Syngap 1 includes seeking opportunities to work alongside Research companies , gain sponsorship for research and conferences, to raise awareness of the condition amongst parents of children with SYNGAP1, and provide support to those families living with Syngap1.
Membership
The Trustees, and all other Volunteers accepted by the Trustees will be members of the Trust, and can make suggestions at Annual General Meetings.
meetings
The Trustees and Treasurer shall meet at least quarterly to fulfill the objects of this Constitution.
The Trustees will hold the Trust's Annual Meeting via video link to which all Members are invited.
The Trustees and Treasurer will present Members with their agreed Annual Report of Affairs, Financial Statement and any proposals for amending this Constitution.
Associates
The Trust is lead from within the UK & is ran on a non-profit basis
Our History
Syngap1 UK was formed in 2019, we are a non-profit Community group. Our priority is to provide support to other families in the community, to collaborate with scientific researchers, and to host conferences to join together both families & professionals who share one common goal to explore Syngap1.
Meet our superheroes
Come & meet the children who are at the heart of our community, their lives are dominated by the challenges they face on a daily basis through living with Syngap1 - they are the real Superheroes.
Useful links
Here parents/carers can find sign posts to other websites that may provide additional help, support and advice.
Photo gallery
Come & see some of the hard work the Syngap1 community have been undertaking to promote & raise awareness in order to support our cause.
Resources
Parents can explore resources that are available to use with their Syngap child. If you have some great resources to share then please get in touch & we would love to load them onto the site to share amongst the community & benefit other families.
Fundraising & SPONSORS
As well as applying for grants/funds our community also works together to raise self- generated income to support families & fund research into Syngap1
Meet Our Team
The team are all from different backgrounds, and therefore contribute their own individual levels of skills & experiences.
Together we are working on behalf of the families to improve the quality of life for patients, parents, carers affected by Syngap1.
Research
Syngap UK support the Patrick Wilde Centre in Edinburgh to undertake research into Syngap1, and also coordinate the UK Conference and research clinics.
Which brings together both families & professionals.