DEBRA is the national charity supporting those directly affected by, and working with, Epidermolysis Bullosa (EB) – a potentially fatal skin condition that causes constant pain due to unstoppable internal and external blistering. DEBRA provides lifelong care and support to the entire EB community.Together we #FightEB and together we will beat EB.

As Captain of the DEBRA Golf Society I was looking forward
to raising money for DEBRA whilst enjoying a fantastic season of golf – sadly things have changed dramatically recently and we will all have to put our golf seasons on hold until we get a grip on this worrying crisis.

For EB sufferers, life has just been made much worse by the pandemic and whilst we can wait a while before we return to the links, their needs won’t wait and in fact for many the situation is potentially more harmful. This is why I am launching the ‘Golf Giving for DEBRA’ initiative. The postponement of the golf season will mean a shortfall of around £50,000 for DEBRA. With your help we can make a dent
in that total.

As an idea why not consider donating a golf green fee or
guest fee that you would have enjoyed over the next two months to help DEBRA.

There are nearly 2,000 golfers in the DEBRA Golf Society; if we stand shoulder to shoulder we can really make a difference in these tough times.

Some of the regular Golf Society supporters have joined me
in kick-starting this campaign with donations totalling £5000 so far.

Please help us make a difference to the lives of EB
sufferers – here’s how:

DEBRA’s national network of 11 community support workers offers invaluable help to people who face the enormous challenges of living with EB.

As we move into uncertain terrain over the next few weeks, it is likely the EB community will face even greater challenges as the current Covid-19 pandemic spreads.  For EB sufferers, the consequences of the virus could be devastating, particularly those who already suffer from fibrosis of the airway tract; have compromised immunity or rely on the decreasing numbers of care staff to help them manage their condition.

With increased pressure on the benefits system it is likely many will also face significant financial hardship, particularly those who are applying for new benefits or are having their benefits reviewed.

In addition to providing advocacy and support to ensure that physical and emotional needs are met, DEBRA Community Support Team will also be offering emergency support grants so that those facing financial hardship can afford to feed themselves and their families whilst making sure those who are isolated and
alone still have access to care provision. 

The £150,000 we planned to raise through DEBRA golf days in 2020 would have covered a significant element of the operation cost of the Community Support Team as well as the funding of support grants. We already anticipate a shortfall of at least £50,000 due to the postponement of our golf days, which may increase depending upon how soon we can all get back out on the golf course.

Please join those of us who have already started to contribute by donating today and help protect the health and well-being of people
living with EB through this period of uncertainty.

My sincere thanks,

Jon Isaacs