DBA UK Chair Report 2020

This is the 9th Chair Report that I have had the privilege to present to you at the AGM. In these unusual times, it has been a privilege to support our families and support them in accessing the right information at the right time during the pandemic of COVID-19.

The past year has been a challenging one with the COVID pandemic taking priority and cancelling our family weekend. We have arranged a virtual conference which is very important for our families to remain connected. There is always some exciting opportunity just around every corner and it remains as important to DBAUK now to strive for the magic brought by its members as it did 20 years ago at the start of the Charity and we think we have moved rapidly to respond to our families needs.

The DBAUK charity continues to deliver to all the members. This is all good news, but requires a lot of work behind the scenes. The committee work tirelessly to raise the funds and support the families and people to fundraise. To allow any of this to happen and to organise the programme that you enjoy this weekend is time consuming and more and more pressure is placed on these volunteers to perform. It is an increasingly difficult climate for fundraising and we are constantly challenged to maintain the income required to carry on. However, we will continue to work with corporate institutions and companies to support our finances. I am pleased to report that we are thriving and it’s thanks to the wonderful families supporting our fundraising goal that we feel secure in our future plans. We have further developed a care pathway, a funding pack to engage our families and funded work in Imperial London.

At the end of this year two members of the committee will step down, which is a time for reflection and change. We are very thankful for the help and support that they have given us over their time with us. 

Perhaps one of the most significant and enriching changes in the last couple of years is our alliance with researchers and clinical leads, and the in collaboration of other UK charities active in red cell aplasia and bone marrow failures, this union brought with it new activities and ideas, initiated locally and providing a strong sense collaboration and belonging of the charity. We are working with new medics and have a wonderful ambassador to champion our Charity at a high level and she and I talk regularly to ensure we are moving forward with research opportunities. We are developing a genetic passport that will track all our blood tests so we are in control of what we give and understand why we do it. We have funded research this year in Sweden and we are looking forward to the outcomes of the work. 

We continue to work with Global Bridges and the DBAF and will continue to work effectively with them. DBAUK offers a unique combination of social interaction, family support, clinical management, and scientific breakthrough in a combination that is transparent and accessible. DBAUK supports people to achieve best health outcomes regardless of location.