The past few weeks have certainly been varied for the team here at Findacure!
Mary Rose and Taryn attended the BPSU Rare Disease Tea Party on 10th July at the Royal College of Paediatrics and Child Health, which included talks from Baroness Blackwood, Parliamentary Under Secretary of State for Public Health and Innovation, and Sarah Lippett, winner of the 2016 Quentin Blake prize for best narrative whose work has been published in the New York Times. Sarah’s book,’A Puff of Smoke’, which is available for pre-order now, is a graphic novel which tells the story of her experience with the rare disease Moyamoya. Both women have harnessed their experiences with rare disease in a positive way to build exceptional careers. This just showed how common rare diseases are and how they appear in every facet of society. Every person has a life story which has shaped them into the person they are today.
Rick featured on Cambridge 105 radio for the first time on 11th July to raise awareness of rare diseases and make the people of Cambridgeshire aware of our Rare Disease Showcase happening on 8th August. You can listen to the interview here.
Taryn was given the incredible opportunity to attend the ‘Gone too soon’ launch exhibition on 15th July at the Houses of Parliament organised by the charity Same but Different. David Hanson MP hosted the exhibition, which uses art to convey the sense of loss and isolation felt by families who lose a child to a rare disease. The exhibition was created by photographer Ceridwen Hughes and involved photographs of the families holding a memento of their child, as well as a 3-D model replicating the child. Parents of the children included in the exhibition testified that seeing the 3-D models was ‘like seeing their child again’. The exhibition was such a humbling experience and showed the huge capacity for art to communicate something otherwise ineffable in a reverent way. View the exhibition here.
The motivation behind the exhibition is ‘to raise awareness among the public, the media and policymakers of the desperate situation these children and their families face and to encourage more conversations around rare diseases and child bereavement’. We salute their mission and hope that this powerful piece will highlight the impact of rare diseases on family members.