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Portland, a London-based public affairs and communications agency who specialise in health communications, have been developing a disease awareness campaign for childhood dementia. The aim of the campaign is to raise awareness of what childhood dementia is and the challenges that families face as well as to alert MPs to some of the access and prioritisation issues around the disease. A couple of weeks ago Andrea West attended a co-creation workshop at their offices along with a number of other rare disease patient organisations, where we were consulted for our insights and thoughts on the tone and message of the campaign.

We agreed that above all, the campaign should be authentic and sincere, truly representing those that are living with Batten Disease and childhood dementia. Consequently Portland have approached us again to see if any of our community would be interested in being involved in the campaign. This can be anything, ranging from providing stories and insights about your experiences to being pictured by the photographer Portland have partnered with. Ceri’s organisation, Same But Different, specialises in taking images of children with disability to raise awareness and fight stigma. These images would be used in the campaign, should you wish them to be.

This is of course all entirely voluntary and if you did wish to be involved, your family’s level of participation and commitment is entirely your decision.

The campaign will be in print, taking place in February, launching on Rare Disease Day and running for two weeks at Westminster tube station, targeting politicians to  impact change for the treatment and management of childhood dementia. The print campaign will be complemented with a microsite of information and stories as well as a social media campaign to help spread the message. The more families that want to be involved, the more authentic and effective the campaign will be, resonating more strongly with the public.

Should you be interested in being involved with the campaign, or would like more information, please feel free to contact Rosie Bartram at Portland via email ( or phone (+44 20 7554 1858).


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