For our first blog post of 2022 we thought we would share some of our personal highlights from last year and how we plan to continue to support the BHD community throughout the next year.
January – March
After a quiet period for the Myrovlytis Trust and BHD Foundation, 2021 marked a new beginning as Anna Webb was appointed as Charity Director in January. Charity Officer Jazzmin Huber joined in February and soon after weekly blog posts and monthly newsletters were re-established.
We also started getting to know some of the BHD community through written and video interviews.
April – June
2 new members of staff joined in this period, Charity Officer Katie Nightingale joined in May, and our Office Manager, Katie Honeywood, completed the team in June.
April marked the first Meet the Expert event with genetic counsellor Lindsay Middleton. This was followed by a second Meet the Expert event in June with Professor Stefan Marciniak who answered all your pneumothorax-related questions.
June also marked the launch of our BHD explainer video (watch it here) and the First World Pneumothorax Day.
July – September
Over the summer months the team were finishing updates to the BHD Foundation website including new printable information leaflets, a BHD medical card and a customisable letter to help you tell family members about BHD.
We also held another Meet the Expert event with Professor Gennady Bratslavsky who shared his clinical and research perspectives on BHD and the kidneys.
October – December
October was a particularly exciting month as we held our first virtual BHD Symposium. Held across 2 days we held both research- and patient-focused sessions and were delighted to have over 240 people register across all sessions. You can watch recordings of our patient sessions here.
Additionally, through the Myrovlytis Trust, researchers and clinicians were able to apply for funding to carry out new research about BHD. Awards were made in November and we will be blogging about our grant awardees very soon!
It has been a great honour to lead the Myrovlytis Trust and BHD Foundation since 2021, reinvigorating our offering and embarking on several new and exciting projects. The BHD community has and always will be at the heart of everything we do, and I am really looking forward to working with clinicians, researchers and families to move the field towards new therapies and eventually a cure. We have big plans for 2022 and are excited to let you know all about them very soon!
I was delighted to join the Myrovlytis Trust Team last February and the year has flown by. Some of my favourite moments included our first Meet the Expert event. It was so lovely to see the BHD community coming together and to hear about the positive impact Lindsay Middleton had on so many lives. Also, despite never leaving my desk I feel I have travelled all over the world. It has been an absolute pleasure talking with researchers, clinicians and families across the globe who all share a common goal of raising awareness of BHD.
I trained as a scientist and worked in a lab doing research before starting at the Myrovlytis Trust as a Charity Officer in May. I was thrilled to be able to use my scientific training to directly impact individuals affected by BHD. I have really enjoyed leading the development of the BHD patient registry and uniting clinicians, researchers and individuals living with BHD to work collaboratively on this project with the Trust. It is difficult to choose just one highlight from 2021 but I think the BHD Symposium, and particularly the patient session focusing on BHD research was my favourite moment!
I was so pleased to be appointed as Office Manager for the Trust in June 2021. I have really enjoyed getting involved behind the scenes to ensure robust processes are in place to help both staff and Trustees get on with their day-to-day roles. One of the highlights of working for the Trust is patient advocacy which can include anything from helping someone find a specialist to creating the monthly newsletter or even assisting with running the BHD Symposium. There is nothing quite like knowing your work has helped someone to improve and manage their own health conditions.
This coming year we will continue to support the BHD community as we have done in 2021 through blog posts, patient interviews and Meet the Expert events and build upon our platform with new patient-focused events and resources.
Work started on the development of a BHD patient registry last year, and we will be launching the platform in the coming months. This is a very exciting project for us, and we hope that the data collected through the registry will enable us to help researchers and clinicians answer some of the unknown questions about BHD including determining the prevalence of BHD and the creation of standardised diagnostic and management guidelines.
To find out about upcoming events, receive updates on projects such as the BHD patient registry and discover how you can get involved with our work, sign up to our monthly newsletter.
Our first event of 2022 is a Meet the Expert event with us! On the 15th of January 2022, we will be sharing more of our 2021 achievements as well as exciting projects we have planned throughout 2022 and beyond. Importantly, this is also your chance to share your thoughts on what you would like to see more of in the future to best suit your needs as an individual with BHD. Tickets are limited, so please secure your place by registering for the event now.
The BHD Foundation