Another very successful CICRA IBD Family Day was held in London on 22nd June during CICRA’s 35th Anniversary year with more than 110 young people and family members, speakers and CICRA trustees participating in this much enjoyed event comprising a range of IBD related educational plenary and interactive breakout sessions with time for questions with both formal and informal involvement. The young people had their own session which enabled them to come together to talk about their own issues. There was time too for parents and family members to mingle, share their experiences and enjoy the refreshments provided.
After a welcome from CICRA Vice Chairman, Rod Mitchell, our new Honorary Medical Adviser, Dr Nick Croft of London, introduced the speakers and facilitated the morning plenary sessions. The theme, which included various slides, was ‘Investigations’ which are necessary before deciding upon the young patient’s diagnosis, treatment plan and follow up, whether for Crohn’s, colitis or one of the similar conditions in children and young people. Professor Ian Sanderson of London provided, in lay language, an overview of pre and post diagnosis paediatric investigations aided by very clear slides, and this was followed by an interesting presentation made by Dr Kirsteen McDonald (London) about Radiology/MRI and other similar tests. To end the talks Dr Nadeem Afzal from Southampton General Hospital gave a very clear explanation of what happens during Endoscopy, including the use and benefits of this type of investigation in seeing exactly what is happening inside the body.
The attentive audience was keen to ask questions of all the Doctors and the feedback received confirmed the linked “Investigation” presentations were much appreciated.
Half way through the morning session we heard from Chloe, a young lady with Crohns who showed a video about the ups and downs of living with Crohn’s and this was followed by her Mum telling of how she copes as a mother of a young person growing up with IBD. Chloe’s video is available for viewing and if you wish to see it click here.
Ahead of lunch, Professor Tom MacDonald spoke emotively about the Charity’s past, present and future and the unusually close working relationships between the CICRA trustees, staff, volunteers, paediatric IBD health professionals and researchers. He spoke of the invaluable peer reviewed grants that had benefitted research and particularly the training of many Paediatric Gastroenterologists treating children today. He mentioned specifically the prime role of our long time Chair, Mrs Margaret Lee, in helping to found the charity in 1978 and of her continuing involvement in various ways since. He recalled how a CICRA grant in the early 80’s had enabled him to come to London and work in the first and only Paediatric Gastroenterology laboratory in the UK based at St. Bartholomew’s Hospital, and funded by CICRA. Professor MacDonald produced slides going back over 30 years which backed up his much appreciated amusing anecdotes that were interspersed among the serious message of 35 years of research.
The afternoon began with the Charity’s 34th AGM in which Trustee Dr Deborah O’Neill highlighted some of the work of CICRA and its achievements. In summarizing the 2012 results in which income reached £300k, of which £239k had been allocated to primarily paediatric related IBD research, she told of the Trustees decision to increase the scope and size of the project awards being advertised in CICRA’s 35th year as it is our hope that in being able to offer a greater level of funding for the highest quality and most relevant research projects, our anniversary initiative can perhaps trigger the next breakthrough in paediatric IBD.
Deborah also mentioned that as the number of children diagnosed with IBD increases so does CICRA’s membership and its work, including contact with the various health care stakeholders and in organising our own regional outreach days.
Two younger fundraisers then spoke about their experiences in being actively involved in raising funds for CICRA. James Ritson told of his involvement with the Blewbury Savages (see CICRA Insider Spring 2013) and how the village, school and others had helped them raise over £4,480 Our Chair Margaret joined James for a photo and the presentation of a Certificate of Appreciation. Oli Monks who is at Lancaster University spoke about his fundraising challenges of “9 for Nicky” named after his 13 year old younger brother Nicky, who has spent the last 4 or 5 years in and out of hospital at Adenbrookes due to Crohn’s disease.
As Oli told us “Nicky missed large chunks of school and spending time with his friends. For me at that age, the biggest disruption was only ever whether I could complete a level of Lord of the Rings on Ps2 before dinner or if I had to actually do some homework. Nothing I say can truly emphasise how disruptive it has been to his childhood. Nicky has also recently had surgery to create a stoma. Sadly, this is something that Nicky has had to go through just recently and has been a traumatic experience for the whole family.” Oli ended by outlining his fundraising challenges programme for the next five years up to summer 2018 and for which he has set a target of £9,000 to raise for CICRA. The 9 challenges are: a Skydive, the 2013 BUPA Great Manchester Run, Hadrian’s Wall Trek, The 3 Peaks Challenge, The Edinburgh Night Ride, the London to Brighton in 24hours (Walk/Run), the Royal Parks Half Marathon, London to Paris Bike Ride and finally, to climb Kilimanjaro in Kenya. As of mid June 2013 he has raised £800 and we will be posting an update in our newsletter as the challenges take place over the years.
The opportunity then for families to join a number of break-out groups, moderated by some of the morning’s speakers with the help of other health professionals, were well attended and much appreciated.
A further break at 3.30pm gave everyone more time to mingle over tea, followed by youngsters in the audience drawing the prize winners in the CICRA Summer Draw and Rod Mitchell announcing the pre-drawn raffle winners. Both he and Dr Nick Croft wound up the day by thanking everyone for being so actively involved and wished them a safe homeward journey.
The Trustees are very grateful to everyone who helped on the day and to Gary Schwartz of the QMU/Royal London for providing his professional expertise in videoing the morning Investigation sessions and for producing a CICRA “educational” video of the 3 sessions which will available on the website soon.