9-13.05 A week of golf at Penina, Portugal with Doug and Jennifer Addy
Penina is a classic golf course designed by the legendary Sir Henry Cotton. There is the main championship course and a less demanding visitors’ course. This was our best week there with brilliant weather – we were very lucky for January; we discovered in future years the weather in January could be more like UK.
3 – 6.2.05 Irish CF Meeting in Killarne
The Ladies went on perilous trip to the mountains in terrible weather while we were at the meeting.
These excellent meetings were organised by Dr Patrick Rafferty(figure) who was employed by one of the main pharmaceutical firms. They started as informal meetings attended by invitation but were so good that they developed into more formal Irish CF Meetings. The social side was always very good and we looked forward to the events. I spoke at a number of these events – on the last occasion, you guessed it, on the “ The History of Cystic Fibrosis”
9-11.1.05 We go to Southampton and stay at the Hilton
I was invited to give a lecture to the British Biochemical Society Annual meeting there. An overview of cystic fibrosis.
22.2.05 CF Trust Finance Committee at Linklaters in London
Travelled to London for the day by train. There were increasing concerns about the state of the economy and the effect it would have on the income of the CF Trust and our commitments to the UK Gene Therapy Consortium.
7.3.05 Meeting of Trustees of the CF Trust at Linlkaters.
Travelled to London for the day to chair the meeting. CF Trust Board Meetings at this time were led at Linklater’s offices in London, thanks to Tony Angel our treasurer. Tony was an important member of the firm.
16-18.3.05 Invited to lecture on malabsorption in CF at the Dutch Hepato-Biliary Association meeting at Veldoven, near Einthoven
The meeting was at the NH Eindhoven Conference Centre Koningshof. My lecture was on CF malabsorption and Carla Colombo from Milan was dealing with CF liver disease. I don’t remember much about the meeting but the hotel was very comfortable. However, one incident is remembered – we asked for wine with dinner. The waiter poured a minute quantity of red wine. I thought it was to taste – but it was the whole portion!
21-22.3.05 To CF Trust, Bromley for Gene Therapy Consortium Meeting
6.4..05 CF Trust Directors of Large Clinics Meeting
This was the CF Trust’s annual meeting for consultants involved in the running CF clinics with substantial numbers of patients – usually more than fifty. We usually invited a guest speaker for after the dinner talk. On this occasion it was Sally Gunnell OBE (photo). Sally won an Olympic gold medal in 1992 in the 400 meters hurdles. She was very pleasant lady and gave an interesting talk.
25.4.05 “Gene therapy: State of the Art” at the Royal Society of Medicine
I was an attendee, rather than a participant, at this meeting and provided a full report of the proceedings for the CF Trust and Trustees. It was a joint conference organised by the International Association for Biologicals, the Centre for Biologics Evaluation and Research and the US Food and Drug Administration and the Royal Society of Medicine
The aim of the conference was to provide an overview of the state of the art of gene transfer research, including vector systems under development, promising pre-clinical studies, updates on clinical trials and genetic disorders and cancer. Safety concerns and key regulatory issues relevant to gene transfer clinical research.
There were over 80 attendees of whom 24 were speakers, many from UK and US and a few from other European countries. I attended both days and wrote a very detailed 10 page report of the meeting to be available at the CF Trust.
Addendum: I must say it makes interesting reading as I write, nearly twenty years later in 2025, when we are still waiting for effective gene therapy for cystic fibrosis. In the meantime new highly effective modulator treatment has totally revolutionised the course of the condition over the past ten years.
28.4.05 CF Trust Awards at the Royal Lancaster Hotel, London
April 2005. We visit Majorca for a week with the Evans family.
7-9.6.05 CF Bromley for Medical Advisory Committee and then the Scientific Advisory Committee
15.6.05 CF Trust Away Day for the staff in Bromley
21- 27.6.05 25th ECFS ANNUAL MEETING IN CRETE
This was a good meeting, almost like a holiday, particularly as we had a few days afterwards to see something of the island with Rosie Barnes and Alan Larson, who hired a car. Had a pleasant few days after the meeting touring round with them on the plateau where farming methods were very traditional
We also had a boat trip to Spinalonga which was once a leper colony. The island was used as a leper colony from 1903 to 1957. The last inhabitant, a priest, did not leave the island till 1962, in order to maintain the Greek Orthodox tradition of commemorating a buried person 40 days, 6 months, 1 year, 3 years, and 5 years after their death. There were two entrances to Spinalonga, one being the lepers entrance, a tunnel known as “Dante‘s Gate”. This was so named because the patients did not know what was going to happen to them once they arrived.
It was a very good meeting.
2005 Summer. We took Ben and Elliott to The Forbidden Corner at Leyburn, North Yorkshire
The Forbidden Corner is “a unique labyrinth of tunnels, chambers, follies and surprises created within a four-acre walled garden in the heart of Tupgill Park Estate and the Yorkshire Dales
Features include The temple of the underworld, the eye of the needle, a huge pyramid made of translucent glass, paths and passages that lead nowhere, extraordinary statues – at every turn there are decisions to make and tricks to avoid.
At one time or another we have taken all our grandchildren there for the day. They seemed to enjoy it.
8-9.7.05 Lecture to German Chest Physicians at Eisenbach, Germany
This was an invited lecture to the Annual Meeting of German chest physicians. It was a very pleasant meeting. We stayed at
the Die Wartburg castle
The Wartburg is a castle originally built in the Middle Ages. It is situated on a precipice overlooking the town of Eisenach, It was the home of St. Elisabeth of Hungary, the place where Martin Luther translated the New Testament of the Bible into German. We also had time to look round Eisenach – a very interesting historic town dating from the middle ages
We also had time to look round It is the main urban centre of western Thuringia and bordering northeastern Hessian regions, situated near the former Inner German border. A major attraction is Wartburg castle, which has been a UNESCO World Heritage Sitesince 1999.
26.8.05 Whole family came to stay with Richard and Sarah in their house in Radyr. It was pleasant weekend and some time was spent on the beach at Ogmore.
30.8.05 Henllys Golf Club at Beaumaris with Mary & George Dawson
One of many visits to the Holiday Property Bond at Henllys in Anglesey. We had a trip to the north coast of Anglesey to the old harbour near the old copper and sulphur mine. Some of the earliest records of ship movements from Amlwch are recorded in the Beaumaris Port account book for 1730.
The rediscovery of Copper at Mynydd Parys in 1762 resulted in the need to develop the port to export goods and import raw materials. Ships like the Speedwell of Pwllheli, Morning star of Conwy, Molly of Cemlyn the Providence of Caernarvon, The Blessing of Aberystwyth, and the Jenny of Amlwch were among those who took cargoes in 1770 & 1771 to the Warrington Copper & Brass company. Each less than 30 tons to enable them to use the facilities at Amlwch.
2005 Another visit to Baltimore for NACFC followed by a holiday in Orlando with the Evans family
We had a great holiday with the Evan’s family at their villa after the Baltimore conference. We seemed to spent a considerable time eating! We did all the usual Orlando things and even got Ann into the pool.
0.9.05 Sandra Kennedy’s retirement dinner at the RAC club
Sandra Kennedy was publications manager at the CF Trust and we had worked together on many publications and guidelines over the years. She was a taciturn but very nice person. We worked very well together and I was very sorry to see her leave. She taught me a great deal about the technicalities of publications. Ann and I bought her a nice watercolour of a couple walking in the Dales and presented it to her at this dinner.
Sir Robert Johnson, was a judge, and one of the early parents involved with the CF Trust in the Sixties and eventually becoming Vice Chairman. He was a great help to me when I was Chairman. Linda his wife was also a major supporter of the CF Trust. Their two children with CF – both died as adults.
2005 Christmas celebrations at Nottingham and Bardsey