The Prime Minister has this week 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.

PM awards outstanding rare disease charity founders and sisters

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, 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.

In a personal letter to Nicola, Prime Minister Theresa May said:

“By drawing on your own experiences as a family, you are providing vital support and guidance to patients and families living with Xeroderma Pigmentosum. Your ‘Little Ted’ bear is a fantastic way to help children, like Eddison, understand more about their condition and stay safe outdoors. Your work through the ‘Teddington Trust’ is making a profound difference to the lives of people with this very rare condition.”

PM awards outstanding rare disease charity founders and sisters

 In a personal letter to Rebecca, Prime Minister Theresa May said:

“With the support of your husband, Wilbur, you and Nicola are doing such important work through the ‘Teddington Trust’ to help families understand more about Xeroderma Pigmentosum. You are also helping educate children in schools about XP, breaking down barriers and achieving greater inclusion and acceptance.”

Rebecca said:

“I am completely overwhelmed by this wonderful recognition. There are so many incredible volunteers at home and abroad, and to have been selected is humbling. This is a great opportunity to shine a light on the challenges faced by our XP community and bring about positive awareness.”

Nicola said:

“We could not have imagined seven years ago when my son was diagnosed with the rare disease, xeroderma pigmentosum (XP) that this would lead us into not only a life of advocacy for others, but also in the founding and establishment of a global charity for the condition, and a rare revolution movement for others living with rare disease. Teddington Trust isn’t just our charity, it belongs to the global XP community that we are honoured to serve and to be recognised by the Prime Minister, alongside my sister is a very special and unexpected moment.”

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.

Regardless of whether it’s a doctor restoring local monuments in her free time, a father teaching young people life skills, or a local musician giving a voice to lonely people, the Points of Light award honours shining examples of volunteering across the UK.