Working Life: Denise Dunne, operations manager, Cystinosis Ireland

Denise Dunne, operations manager, Cystinosis Ireland

7am

The Covid 19 pandemic has transformed my working day so I’m up early to try and get a head start before the kids wake up. I check emails and news sites on the laptap. It’s a difficult time for people with cystinosis which is a rare, metabolic progressive disease that leads to severe organ dysfunction.

Some of our members had kidney transplants and are on immunosuppressants, so this virus is very worrying. Others attend hospital for dialysis and it’s not ideal for them to go into that environment.

9am

I take a break to get the kids sorted with breakfast. They’re both in primary school and their teachers are great at sending out suggestions to keep them occupied.

My husband is working from home too, so we juggle childminding. Recently, most of my time has been devoted to organising an international conference which was due to take place in Dublin in July but is now taking place virtually tomorrow. More than 350 people are registered to join us online, which is a bigger reach than we expected.

11am

I put a call in to our keynote speaker, Dr Stephanie Cherqui, University of California, San Diego, to make sure she is comfortable with the tech. We’re using Zoom and we don’t have an IT department, so it’s been a steep learning curve.

Dr Cherqui will tell us about a clinical trial she is running using gene therapy. The aim is to stop the progression of the disease.

We’ve organised breakout sessions during the conference where people can take part in smaller discussion groups, for example, parents of children with cystinosis.

12 noon

I break for brunch.

1pm

I touch base with more of our speakers to make sure everything runs smoothly tomorrow. We have seven translators,so while the conference is done over Zoom, those tuning in can use a translation app.

3pm

I link in with our fundraising committee. It’s going to be tough this year as most of our events were due to take place from now on. We aim to raise €100,000 per annum to fund research of cystinosis which is characterised by an accumulation of the amino acid, cystine, in organs and tissues.

To register free for Cystinosis Ireland’s online international family conference, taking place on Saturday April 25 from 12pm to 7.30pm, visit www.cystinosis.ie