Suffolk volunteer with genetic condition gets award
- Credit: Archant
A young volunteer who founded a support group for people affected by a rare genetic disorder has been given a high profile award.
Jessica Cook, 24, from Stowmarket, was born with NF2 – Neurofibromatosis Type 2 – an incurable condition that affects one in 35,000 people and causes tumours to grow throughout the nervous system, most commonly seen in the brain and spine.
These tumours are mainly benign, but they can cause life-changing symptoms such as hearing loss, visual impairment and mobility problems due to the pressure exerted on key nerves.
Now Ms Cook has been given a Point of Light award and been praised by the prime minister for launching the group Can You Hear Us?.
Along with a small team she has built up an online comunity forum, monthly support groups and social gatherings to bring people with NF2 together.
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The group has also published a book called NF2: Our Journeys, which contains a collection of life stories written by people with NF2.
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