Prime Minister Theresa May awards rare disease charity founders -
rare disease, rare disease digital communications agency, digital health, patient engagement, patient identification
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Prime Minister Theresa May awards rare disease charity founders

On May 13th 2019 the UK Prime Minister, Theresa May  recognised Nicola Miller, based in Kent, and her sister Rebecca Stewart, from Aberdeen, for raising awareness of the very rare condition Xeroderma Pigmentosum (XP) through their charity, the ‘Teddington Trust’, which globally offers emotional and practical support to patients and families affected by the condition.

 

XP affects less than 100 people in the UK, and when Nicola’s son, Eddison, was diagnosed in 2012 at the age of one, the family knew nothing of the condition. It was then that Nicola, alongside Eddison’s aunt and uncle Rebecca and Wilbur, set up the Trust to provide free educational resources on the complex condition. Their Ted bear, dressed in UV protective clothing and with a UV reactive paw, has helped 650 children in 11 countries understand their condition through play. Aiming to also achieve greater inclusion and acceptance of rare diseases amongst the wider community, Rebecca and Nicola have developed school resources that share information about XP.

Nicola and Rebecca are also the co-founders of’Rare Revolution Magazine’, a free access, cross-condition, rare disease publication aimed at raising awareness for the wider rare disease global community. They produce a free digital magazine which shares patient voices to educate others into the reality of living with a rare disease and to inspire others.

Nicola and Rebecca are the latest recipients of the Points of Light award 1, which recognises outstanding volunteers who are making a change in their community and inspiring others. Each day, someone, somewhere in the country is selected to receive the award to celebrate their remarkable achievements.

 

Nicola and Rebecca are the 1170th and 1171st winners of the Points of Light award, which has been developed in partnership with the hugely successful Points of Light programme in the USA. Over 6,000 Points of Light have been awarded in the USA, and former Presidents have publicly supported the partnership with Points of Light UK. There is a similar cross-party approach to the UK programme and MPs from different parties often present their constituents with their Points of Light awards.

 

  1. The Points of Light awards recognise outstanding individual volunteers, people who are making a change in their community and inspiring others.

 

If people know someone who could be a Point of Light they should write to the Prime Minister at 10 Downing Street. www.pointsoflight.gov.uk

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