Closure of the Myrovlytis Trust

It is with great sadness that we announce the passing of our founder and Chair of Trustees, Dimitris.

This is a major loss to the BHD and osteosarcoma community and has an impact on the future of operations. As they are sole funder of the Trust, we have not received 2025 funding and are unable to access funds      

About Dimitris

Dimitris founded the Myrovlytis Trust in 2007 with a passion to improve the lives of people with rare diseases that are often overlooked for more ‘common’ conditions. He has been the sole major funder of the Trust from inception.

His kind donations have meant we have been able to support research into BHD[3]  and in more recent years osteosarcoma. Dimitris did not have BHD. He identified a community that needed support and helped it.

He has also funded the operational costs for the Trust and in turn the BHD Foundation. Dimitris has placed millions of pounds of his own money and his time into supporting what he described as ‘one of life’s missions for me’.

Dimitris was kind, compassionate, and extremely humble. Whenever he was thanked for his support, he deferred it to the Trust’s staff team. He remained a silent member of the Trust, preferring the limelight falls on staff and the wider community that we support.

We will be forever thankful for the opportunity Dimitris has given to us to support the rare disease community. His passion will live on through the work the Trust carries out.

The staff team and our trustees are deeply saddened by this loss. It has been an honour to have known and worked with such an incredible person. Our hearts go out to Dimitris’ wife, children and wider family and friends at this difficult time.

What does this mean for the future of the BHD Foundation? 

It is with great sadness that we announce that the Myrovlytis Trust has been placed into voluntary liquidation and are going through the formal process of shutting the charity. This process started in July 2025 and can take several months to finalise.

Our staff team

Our staff team have been made redundant. We would like to thank all staff from the Trusts inception to present for their hard work and dedication to supporting rare diseases. The Trust would not be able to achieve what it has without them.

Our CEO, Katie Honeywood, has continued to support the liquidators and to put in place plans for the future of the patients and wider community that we support.

 

The future of the BHD Foundation

The BHD Foundation website has been purchased as part of the liquidation process. It has no links to the Myrovlytis Trust or BHD Foundation which will cease to exist and will be closed by the Charity Commission.

The Patient Advisory Board setup by the Trust has established a transition leadership team to ensure the legacy of Dimitris and the Trust lives on.   They will continue to operate as a group with voluntary support from Katie Honeywood, Myrovlytis Trust CEO, and the wider research and clinical community such as members of the Science Advisory Board group.

Members of this group are offering to contribute from their own finances to ensure the website and registry continue and to start to chart a new path for the BHD community. They will be seeking advice, help, and financial support from the broader community.       

We will be announcing plans for this in the coming weeks and hope that you as community members and users of the website can support this vital ongoing resource for yourself, your families, and future BHD patients.

The BHD Patient Registry is owned by a third party. The reason for this is to ensure data is confidential and no personal information such as names, addresses, health conditions etc are passed on to anyone outside of the database owners including Trust staff and the Transition Leadership. This data will remain on the registry and we will be fundraising to continue to provide this resource so it can be used in the future as a research project.  As you might imagine it is a vital resource, helping the scientific community determine additional conditions and risks that are not yet formallyproven to be associated with BHD.

All social media accounts will continue as is. This is being led by Katie Honeywood.  The primary communication channel for the future of the BHD foundation will be the BHD Foundation Facebook page. If you have not signed up to this page, please do so by visiting www.facebook.com/birthoggdube

The contact@bhdfoundation.org and contact@myrovlytistrust.org email addresses are no longer available.

Message from Katie Honeywood, CEO

I started working with the Trust in 2021. I was employed by the late Dr Anna Webb whom we lost in 2023. Working with both Anna and Dimitris is difficult to put into words. Both had unconditional empathy and the ability to make peoples days better by just being themselves. Not only were they my employers and mentors, they were both my friends. It is with great sadness for me personally to have lost two genuinely amazing people who have had such impact upon peoples lives. I am forever humbled by the faith they put in me.

I would like to say a big thank you to the BHD patients who are allowing me to support them with the next steps and the Bardo Foundation for taking on the Osteosarcoma Now part of the Trust. When I learnt of Dimitris's death I started to think about how we can keep his legacy and desire to make the world better going. You have allowed this to happen. You are truly amazing. Thank you!!!!!!

It has been an honour to have supported and served the BHD community. As a team of employees and trustees we have loved being part of your journey. Each one of you, from patient to family member to carer to researcher to clinician, have amazed us daily by showing us your strength in living with these diseases and willingness to raise awareness. We have faith that through you and other charities this support will continue. You should be proud of who you are and what you have done. Thank you for being there for us as much as we have been there for you.

Take care of yourselves and each other.

Katie