Look out for the bright lights on Sunday when Merseyside will be shining a light on neurofibromatosis, a debilitating and lifelong condition that can have a devastating impact on lives.
“For many people, me included, it can involve chronic pain, disfigurement, headaches, fatigue, both visible and invisible tumours, alongside an increased risk of certain cancers,” says Georgia Baum, Liverpool ambassador for the charity Nerve Tumour UK. Georgia, 25, adds: “It can also impact the brain, the nervous system, some people experience neurodiverse traits such as learning difficulties, ADHD and autism, and challenges with memory, processing, and coordination.”
“Despite affecting approximately 1 in 2,500 people, awareness remains incredibly low. Many people living with the condition face misunderstanding, delayed diagnoses, and the emotional impact of feeling unseen - particularly because so many symptoms are invisible.”
Landmarks Lighting Up for Neurofibromatosis
- ACC Liverpool
- George’s Dock
- Port of Liverpool Building
- Royal Liver Building
- Liverpool Parish Church (Our Lady & St Nicholas)
- Merseyside Police Headquarters
- University of Liverpool – School of Engineering Building
- Bootle Town Hall
- Southport Town Hall
- The Atkinson, Southport
- Woodside Ventilation Station, Birkenhead
- Seacombe Ferry Terminal Clock Tower, Wallasey
- Wallasey Town Hall
- Steve Prescott Bridge, St Helens
For more information, call the Nerve Tumours UK Helpline on 07939 046 030.
Charity Run Raises £9 Million for Spinal Cord Research
Runners – and wheelchair users – helped raise an amazing £9 million for spinal cord injury research at the UK’s biggest ever Wings for Life World Run. More than 200 runners lined up on Sunday at Everton FC’s Hill Dickinson Stadium – joining more than 346,000 participants from all over the world in the annual event.
Report Warns Vision-Impaired Children Overlooked in Education Reforms
The needs of children and young people with vision impairment are being overlooked in the Government’s proposed reforms of specialist education, says a new report. The benefits that specialist schools bring by providing holistic support, covering education and independent living skills are highlighted in the report commissioned by New College Worcester (NCW) and supported by the Royal National Institute of Blind People. It says that, without the right support, children and young people with vision impairment are vulnerable to becoming economically inactive and stuck in a benefit trap.
Rachel Perks, principal at NCW, said: “We’re concerned that not enough is being done. I worry that without proper redress, many children with vision impairment will end up out of education for long periods of time.”
There has been a 469% increase in education, health and care plans (EHCP) appeals since 2016, but the numbers for vision impairment have remained fairly constant, currently making up 0.8% of all EHCPs. Students with vision impairment are frequently out of school while awaiting funding decisions during tribunals, which can happen at any time of year.
The report also identifies a lack of clarity about the role of specialist schools in the recent SEND White Paper. It recommends that funding for vision impairment is ring-fenced, highlighting that the disability is low incidence but high need.
Other Recommendations Include
- An increase in Qualified Teachers for Vision Impairment (QTVIs) and Habilitation Specialists. There are currently just more than 600 QTVIs and 120 Habilitation Specialists to support more than 37,000 children with vision impairment across the UK.
- The formal integration of the Curriculum Framework for Children and Young People with Vision Impairment into National Inclusion Standards.
Dr Rachel Hewett, co-director of Vision Impairment Centre for Teaching and Research (VICTAR), based at the University of Birmingham, said: “While we’re encouraged at the Government’s recognition of the importance of drawing on specialists to support children with SEND, the broad needs of low incidence groups like children and young people with vision impairment must not be overlooked in these reforms. By having formal recognition of the Curriculum Framework for Children and Young People with Vision Impairment, we can ensure these holistic needs are met.”
