A message from our new CEO

A message from our new CEO

I am very grateful for all the kind words and gestures of support I have received from LUPUS UK members, supporters and volunteers as I take on the role of CEO during this very inauspicious time. I’m honoured to have the confidence of the charity’s Trustees and I’m anxious to continue and build upon the incredible legacy of this important organisation.

For anyone who doesn’t already know, my predecessor in this role, Chris Maker, made the decision to go into ‘semi-retirement’ approximately two years ago. We’re very fortunate that Chris is staying with the LUPUS UK team as our Finance Manager. It means that we’ve had a smooth transition, his invaluable experience is on-hand, and his reliable eyes are monitoring the charity’s finances.

Many of you may know me already, or may have at least exchanged messages with me on our social media channels or forum at some point in the past nine years. For any of you who don’t know me, allow me to briefly introduce myself.


In early 2011 I’d finished university and was excited to find a career. My friend Heather had sadly passed away as a result of her lupus three years earlier and I was passionate about working in the charity sector, so I wrote LUPUS UK a letter. A few weeks later I made my first visit to LUPUS UK National Office in Romford, met with Chris and soon after began volunteering a couple of days a week to help establish the charity’s online presence. After a few months, the charity offered me a staff position and I was thrilled to join the incredible team. I’m proud to have been employed by the charity for eight-and-a-half years and work with such dedicated and friendly group.

The coronavirus (COVID-19) pandemic is having an unprecedented impact on the world. On the 27th March 2020 we convened a special meeting of the Board of Trustees by teleconference to discuss LUPUS UK’s response to the crisis.

It is very clear that the information and guidance published by the UK government hasn’t been comprehensive enough and as a charity we have been inundated with enquiries. We’re very grateful for the patience from all of you as we try to respond to each question. We are continuing to update and improve our information and guidance about COVID-19 to make it easier to understand and keep you advised about any changes.

An unexpected development from this pandemic is the interest in hydroxychloroquine as a potential treatment for people with COVID-19. The evidence at present is very thin, although more trials are underway. Unfortunately this has had an impact on supplies of the medication in the UK and we’re now experiencing a shortage. LUPUS UK is working closely with our partners in the Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA) to get reassurance from the UK government that stable supplies of this medication will be available for people with conditions like lupus throughout the pandemic. You can read more about our activity so far and how to get involved HERE.

LUPUS UK wants to help support people affected by lupus who are impacted by the coronavirus and the measures implemented by the government to limit its spread. The Trustees are reviewing what we can offer in the form of welfare support and we hope to provide more information about this very soon.
If you are in crisis, please contact us.  Please note; if you have an urgent medical crisis you should contact 999 or 111 as appropriate.

Due to our careful reserves policy, LUPUS UK is not experiencing the same type of financial crisis as many other charities. The sustainability of our work is incredibly important so we always have safeguards to ensure we’ll continue to be here for people affected by lupus. We have decided not to proceed with our spring 2020 medical research grant funding; the research proposals we received were unlikely to proceed anytime soon due to the re-deployment of NHS staff to front-line services and the additional funds will provide the charity extra financial security.

We will unfortunately be missing out on a lot of income in 2020 due to the large number of cancelled fundraising events. One of the best ways that you can help the charity to continue its work is to take up annual membership and encourage others to do the same. Your £10 or £15 annual subscription will help LUPUS UK to provide information, guidance and support throughout this crisis. The more members we have, the greater the impact we can have! Please, if you are not a member, join online today and encourage your family, friends and colleagues to do the same. Help us to be here for people affected by lupus in the UK who need support. Together, we can get through this crisis.

I’m really looking forward to seeing many of you at support group meetings and fundraising events when this pandemic is over. Until then, take care of yourselves and others.

Kind regards,
Paul Howard
Chief Executive Officer


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