List of Recommended Charities that can help

The charity recommends the following UK wide charities for help and support.

Lowe syndrome – challenging behaviour

The DNA mutation affects the brain and symptoms may include cognitive and learning difficulties and what is known as challenging behaviour traits.  The recommendation from NICE is that whoever is responsible for the welfare – such as  the local authority or should develop a behaviour support plan, stating with an assessment of the behaviour, a rating of the aberrant behaviour,  and a risk assessment. For further NICE information on an assessment click here.

The challenging behaviour foundation – challengingbehaviour.org.uk

The challenging behaviour foundation is a UK wide charity that provides information and guidance about challenging behaviour and connected issues, including information sheets, FAQs, packs, templates and DVDs. The charity offers help with challenging behaviour and PBS Positive behaviour Support.

Contact UK – contact.org.uk

Contact UK are UK wide charity providing support and guidance for disabled children, with information on early years support, benefits and tax credits, education and learning, cost of living support and have a helpline. There is also an online search tool for charities that provide direct grants to families with financial problems.

Mencap UK – mencap.org.uk

Mencap is a large charity with a network 320 local offices and groups across the UK that help people with learning difficulties, that includes activities and respite care. The Lowe charity recommends that Lowe families make a referral to Mencap for help. Services include:

• Find a local group
• Learning difficulties helpline
• Child 0-18 Advice and information
• Adult 18+ advice and information
• Springboard – Activities such as trips to cinema, events,
• Fit2gether – Sport and exercise swimming etc

Downs Syndrome UK – downs-syndrome.org.uk

While Downs and Lowe Syndrome are different conditions there are some similarities and the Downs website has some useful information and publications on social care, benefit entitlement and care that applies to Lowe syndrome. Useful documents are:

• Getting the right support plan
• You can print out and use this booklet to explore everyday activities for a Lowe Adult

Thera Trust – thera.co.uk/about/

Thera Trust is a charity that offers activities, assisted employment and qualifications for people with a learning disability. It is a group of organisations that seek to demonstrate that people with a learning disability can be leaders in society.

React – reactcharity.org

React – Rapid Effective Assistance for Children with potentially Terminal illness is a dynamic charity working to improve the quality of life for children with life-limiting illnesses living in financially disadvantaged households throughout the UK

The Movement Center – the-movement-centre.co.uk

The Movement Centre provides children’s physiotherapy, and we specialise in Targeted Training. We help children who have Cerebral Palsy, Down Syndrome or other diagnoses to achieve new skills, through increased strength and control of their movement. Every child has an initial assessment to determine if Targeted Training is suitable. If so, a specialist standing frame will be supplied. Targeted Training is specific and accurate, and you will be given guidance and support to practice the therapy at home.  Continuity is important and we ask families to commit to 30 minutes a day.