Our Committee Member, Lindsay Jarrett visits Mereo Biopharma to highlight Alpha-1 community needs
26th November 2019
On 26 November 2019, Lindsay Jarrett, Committee Member of Alpha-1 UK Support Group, visited Mereo Biopharma at their offices in London. Following the Alpha-1 UK Support Group's Annual Social Gathering & Information Day on 14 September 2019 in Daventry, the Mereo team wanted to understand the true impact that Alpha-1 has in real life; and what it means in reality for people who are progressing rapidly along to serious lung disease at young age.
Lindsay kindly agreed to represent the Charity and travelled to London to join one of the company’s “Town Hall” meetings, hosted by its Chief Executive Officer, Dr. Denise Scots-Knight, where all employees from all locations and all functions are invited. Learning about the impact of Alpha-1 from a real-life perspective is important for all functions, because office-based roles may not have the opportunity to participate in Alpha-1 events to learn about rare diseases and organisations like ours that represent the Alpha-1 community.
During the meeting, Lindsay shared her personal journey with the staff, from her early life with many unexplained health issues; through an early and highly successful career that also exposed her to health risks that likely caused further damage from Alpha-1, and her increasing health problems developing over the years, caused by the repeated failure to diagnose her condition correctly. Lindsay shared the impact of finally getting a diagnosis and the impact this had not only on her but also her family.
Lindsay also described her experience of going on to receive a double lung transplant and highlighted to all the importance of early and correct diagnosis to allow people to manage their Alpha-1 as effectively as possible and to make good lifestyle choices; as well as getting the right treatment at the right point. And she urged all research companies and institutions to listen to the Alpha-1 community and seek to respect and respond to their needs at every step of the way. We hope to see many more companies and company representatives at our meetings in the future, so that they can listen and learn about what is really important to us.