Francis Menassa: How one little-known charity is making a huge difference

By Francis Menassa

“UK charity group DEBRA, which funds research and healthcare to support individuals and families affected by Epidermolysis Bullosa (EB), has recently stepped up its fundraising efforts in an effort to fight the rare condition”, — says Francis Menassa.

EB is a group of inherited skin disorders that cause skin to blister and tear at the slightest touch. Those suffering from EB experience painful wounds on their hands and the soles of their feet, and in some cases, internal linings and organs are also affected. There are often complications as a result of infection, and in the worst-case scenario, EB can be fatal.

DEBRA may be a small charity, but in terms of impact, it punches above its weight. It receives most of its income from its extensive network of high-street shops — of which there are 130 located across the UK — however, it also generates income from Gift Aid and fundraising activities. Among charities with shops, DEBRA is in the top 12 in terms of income, generating more than £2 million per year.

According to Francis Menassa, in late 2018, the charity celebrated its 40th anniversary with a fundraising dinner at Buckingham Palace. Hosted by The Countess of Wessex, the dinner raised over £300,000 to fight EB. Thanks to Spiderman actor Tom Holland and his family charity, the Brothers Trust, DEBRA raised £44,000 from a photo of Tom Holland that was taken by EB sufferer James Dunn. Dunn sadly passed away in 2018, aged just 24.

Making a difference

Most of DEBRA’s charitable spend is directed towards research and there are now 24 researchers that are funded by the charity. These researchers are focused on improving our understanding of the biology and the genetics of the disease, including the nature of wound healing. They are also focused on finding more effective treatments and prevention strategies, and they are trying to find cures through gene, cell, drug or protein therapies.

In addition, says Francis Menassa, “DEBRA provides a lot of practical support. Those affected by the condition are generally covered in painful blisters that need constant attention and treatment. It can take several hours every day for parents to bandage children that suffer from EB. DEBRA also helps children cope with transitions in life, such as when they start school or university”.

Fundraising activities

Francis Menassa says: “When I first heard about EB back in 2011, I knew instantly that I needed to help DEBRA raise money for this terrible condition. Since then, I have taken part in many fundraising activities to help raise money. While some have been fun, others have been extremely challenging”.

For example, between 2012 and 2015 I participated in the annual ‘HotChillee LONDON-PARIS’ bike ride. This is a 500km ride over three days which ends in Paris for the final Stage of the Tour de France. This event required months of training and fundraising, but it was worth it and it was great fun, despite the fact it was hard work.

Another major fundraising activity is clay pigeon shooting events run by the DEBRA Shooting Society. Launched in 2004 by Richard Purdey — who was Chairman of high-end gunmaker James Purdey & Sons at the time — and supported by Daryl Greatrex, managing director of gunmaker Holland & Holland, the Society organises a number of charity clay pigeon shooting events around the country every year. They are well-run events and I usually take either friends or work colleagues along. Each year, DEBRA raises over £75,000 from these events alone. There are plenty of other interesting events as well, including golf days, gala events, and even a ‘Butterfly Walk.’

According to Francis Menassa, DEBRA is making great progress and the impact the charity is having really is impressive. Yet there is still plenty of work to be done. Given the pain and devastation that EB causes, we must continue to fight for those suffering from the condition.

Francis Menassa is the CEO and Founder of JAR Capital, an independent wealth and asset management firm based in St. James’s, London.