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In search of tomorrow's inspiring headline... a diabetes cure

JDRF-logo-2016If the word ’diabetes’ looms large in your life, some days must seem like the Malvern Hills and others like the north face of the Eiger. Whichever, it’s hard not to gaze ahead and believe that the peak never seems to come closer. Better to take one step at a time, remind yourself how far you’ve come, and concentrate on what you need to do to reach the summit.

If you’ve never thought about the disease, you should. To help, Juvenile Diabetes Research Foundation’s website spells the facts out simply and starkly.

Diabetes is a chronic, debilitating condition that impairs the body’s ability to use food properly. It affects 150 million people worldwide, a number that’s expected to double by 2025. It can cause kidney failure, adult blindness, stroke and heart attacks.

Type 1, or juvenile, diabetes occurs when the pancreas stops producing insulin, a hormone that enables people to draw energy from food. It usually strikes in childhood, and it lasts a lifetime. Type 2 diabetes happens either when the pancreas no longer produces enough insulin, or when the body can’t use it efficiently. There’s no cure for either.

That’s where JDRF comes in. It was founded in 1970 by a small group of American parents whose children had been diagnosed with type 1 diabetes and faced a life-threatening condition. They weren’t prepared to let that go on for ever.

JDRF UK became part of the mission in 1986, fuelling the global fund-raising effort and distributing vital cash – more than £500m to date – to support the experts toiling to find the cure. This year, around £3m has been given to more than 20 UK research projects studying the causes, prevention, treatment and cure of diabetes and its complications.

donorflex has been one of the cogs whirring quietly but consistently behind the scenes since 1995, working for the moment when headlines scream the great news.

A year later, Ruth Best became Director of Communications and quickly set about adding her significant contribution to the mission.

"The person who’d done the job before had left five months before," she recalls. "During the period when the post was vacant, donorflex hadn’t been touched. There was a bit of a backlog. Before that, donorflex had been used for donations and managing our friendship scheme. At the stage, we had maybe 100 of them. And that was it."

It pays to be organised

Her leap in at the deep end involved using Organised Events – a far cry from the module that features as a highlight of donorflex 7 – to complete the setting up of a research meeting. It improved on the combination of spreadsheets and paper used beforehand, and Ruth soon began to make her mark.

She quickly put Organised Events to use recording and tracking the runners and walkers who remain the bedrock of JDRF’s fund-raisers to this day.

"We use it for the London Marathon and all the other running events, probably about six or eight a year, anything from 20 to 200 runners per event," she explains. "We have six walks in five regions around the country, so there’s about 8,000 walkers a year.

Each of the walks uses donorflex, everything from sending out Save the Date mailings, all the way through to logging all the income. It just rolls, year on year."

The module’s also used to record and track individual targets.

"For instance," she says, "we asked the marathon runners to raise £1,500. You can see how they’re going."

During her time there, JDRF has benefited from donorflex, and vice-versa. The early Organised Events module boasted what she affectionately refers to as the ’tables and seats’ fields. She used them, but not for their literal purpose.

It led to a suggestion to the donorflex development team, which led to the inclusion of User-Defined Fields, via which users can set up individual fields and tickboxes – like ’T shirt size’ or ’Team Captain’ – in templates for individual events. It wasn’t the first example of donorflex being improved by feedback from the rockface, and it won’t be the last.

Keeping the wheels turning

donorflex keeps the wheels turning across JDRF’s entire spread of six offices from Aberdeen to Southampton, with Liverpool, Birmingham, Bristol and London HQ in between. JDRF has three meetings a year where staff from all regions come together to share best practice and, among other vital details, data policy and operating procedures are discussed.

"We have a very comprehensive manual that we’ve specifically put together for JDRF," she explains. "We also have smaller documents. So, for example, when we’re coming up to a walk, or when we’re doing a Gift Aid claim, we’ll go through it again. We’ve done a lot of that over the past few years."

They’ll do it in the years to come, too, when donorflex underpins an expansion of the JDRF operation into the remaining nations and regions of the UK, and via a broadened donor base. There’s a compelling reason.

Obviously, your database is only as good as the information you put in it. What we can see now that we couldn’t see five years ago is how donors have come to us, what they’ve been involved in – Why using Powersearch is important to JDRF

"With Type 1 diabetes, it’s growing at about 4 per cent a year in children. But children are being diagnosed younger and younger. The younger they’re diagnosed, the more likely they are to develop complications."

It means that, as well as going to clinics and hospitals, doing presentations at schools and clubs, and visiting companies to build walk teams, JDRF staff will concentrate on acquiring new donors who can be persuaded to become regular givers and grow the organisation into one that raises £5m-plus a year.

For a foundation that funds research – rather than a support service, where the fruits of giving are visible in the shape of gardens, televisions, buildings or minibuses – that’s not going to be a stroll in the park.

At one event, around 18 months ago, a group of scientists had just discovered the third gene that makes us susceptible to becoming diabetic, so they were able to give very detailed information about that.

Otherwise, apart from knowing a diabetes sufferer, or being inspired by the achievements of diabetics like Olympic hero Sir Steve Redgrave, or former England soccer star Gary Mabbutt, the encouragement to contribute to JDRF comes from website headlines like these:

  • JDRF Volunteer, Tilly Dunne (12), on diabetes awareness mission (19/06/05)
  • Drug Preserves Beta Cell Function in Type 1 Diabetes Patients (July 2005)
  • New JDRF studies point to insulin as a trigger for diabetes (17/05/05)

One day, thanks to the sum of many parts, the story will be ’Cure found for diabetes’. Until then, there’s much work to be done.

Tell me about

JDRF is the leading voluntary funder and advocate of type 1 (juvenile) diabetes research worldwide.

It was founded in 1970 in the USA, with a mission to find a cure for diabetes and its complications through the support of research – and it’s proud to boast that the organisation has funded, at least in part, every major breakthrough in diabetes research in the past three decades.

The UK branch was established in 1986. Research funding decisions are made by a scientific peer review committee and a lay review committee, both of which are international.

JDRF in the UK is an independent charity with its own Board of Directors and registered with the Charity Commission of England and Wales.

At a global level, JDRF Volunteers and Staff have raised funds that have allowed £500m to be spent on diabetes research since the Foundation’s inception.

Local organisations around the country help schools and businesses understand diabetes and work with children and adults with diabetes.