Videos - Birmingham conference 24 May 2018



CLL Member Conference - Birmingham

Thursday 24th May 2018

Aston Conference CentreAston University, Aston St, Birmingham B4 7ET

10.00am

Arrivals, Refreshments, meet table buddies.

10.30

Welcome, domestics

Marc Auckland

Trustee

10.35

CLLSA – Members Update

David Innes CLLSA Chair

10.50

Optimal Therapy for CLL in 2018

Paul Moss is Professor of Haematology, Head of the School of Cancer Sciences at Birmingham and an honourary Consultant in haematology. His primary interest is the study of the immune system and human health.in He enjoys an international reputation for his research. Includes a 20 min Q & A session

Prof Paul Moss

12.00

The ideal Patient Journey

Presentation of the ‘ideal’ experience for a CLL patient from diagnosis onwards.

Marc Auckland

12.10

What Information do CLLSA Members want?

Your opportunity to influence the direction of your Association so that it provides for the needs of its members

John Moore 

Trustee

12.25

CLLSA Champions update and Raising Our Profile Champions

The member survey last year identified several volunteer opportunities for members. Roger will explain the roles and the launch of the first ‘champion role’.

Roger Huxley

Trustee

12.40 -13.30

Lunch (Choose your break-out group)

 

13.30

Profile-Raising Champions and ‘What do members want’ Breakout Session 

Facilitators and table groups

14.00

The Genetic basis of CLL 

Prof. Stankovic runs a research group in cancer genetics, including  CLL, with the ultimate goal of translating this research into clinical trials. Inc 10 min Q & A session.

Professor Tatjana Stankovic

14.35

Refreshments and comfort break

 

14.50

Optimal vaccination policy for patients with CLL

Helen Parry is a clinical lecturer in haematology and a clinical haematologist. Helen conducts research into the immune dysfunction in CLL patients. Inc 10 min Q & A. 

Dr Helen Parry

15.15

CLLSA Member - Patient Story

Stewart Edwards

15.30

Report Back

John and Roger will summarise breakout discussions

John and Roger 

15.50

Closing remarks by CLLSA Chair. Thank all, gather feedback sheets

David Innes

4.00

CLOSE

Marc

The keynote speaker at this Conference was Professor Paul Moss who is Head of the School of Cancer Sciences at Birmingham and an honourary consultant in haematology. His primary interest is the study of the immune system and human health. His presentation focused on the latest developments in CLL Therapy. Paul, an excellent communicator, is able to translate complex medical research into plain English. Paul involved the audience with mini quizzes and answered all the written questions in the Q&A session while expertly keeping to time. He introduced the key figures in the discovery of Leukaemia and explained CLL and how it is diagnosed. He then moved to typical treatment trigger points and paths dependent on the profile of the CL, covering current first line treatment of Chemo, its origins, how it works and its impact. He moved on to second line treatment. He outline pros and cons of chemo again and then explained the use of ibrutinib as second line treatment and its impact on survival rates over other treatments. Paul then introduced the impact of Idelasib and Venetoclax, ‘the latest wonder drug’. He shared the most recent studies, research and results of the latest therapies including Stem Cell transplantation. He concluded with his view that in future combination therapies are the immediate source of dramatic improvements in survival. A key thought shared was when he looked at his medical students in their twenties. He believes cancer will be a completely treatable and curable condition by the time they reach their mature years!

 

Professor Tatjana Stankovic, a research scientist in cancer genetics spoke in the afternoon on the Genetic base of CLL. Tatjana covered the emergence of the cell mutations, typical disease profiles in patients, approaches over the decades to CLL management and the typical approaches to killing CLL. Her research suggests that the DNA cell damage caused by CLL can be targeted with PARP Inhibitors such as olaparib. (Poly (ADP-ribose) polymerase (PARPis a family of proteins involved in a number of cellular processes such as DNA repair, genomic stability, and programmed cell death.)

 

Dr Helen Parry, a clinical lecturer and haematologist in the team spoke on optimal vaccination policy for CLL. The key part of Helens address, resulting in most questions, concerned the recommended list of vaccinations and the lack of consistency in surgeries and clinics in managing a vaccine regime. Her view is the CLL specialist clinic needs to take the lead in this area.

 

An update on CLLSA activity was presented by Olga Janssen in the absence of David Innes (Chair). Olga briefed on the latest NHS England guidance in use of Ibrutinib in second line therapy and the media and political lobbying CLLSA and partners have created to challenge the move away from NICE guidelines. Olga invited the members to contribute to the campaign by writing to their MP and signing the online campaign. Olga also covered the launch of raising the profile of the CLLSA, champion roles including fundraising activity.

 

The other major element of the day was a briefing leading to breakout work on the new champion roles and ‘what do members want of the CLLSA in the future’. This was led by John Moore and Roger Huxley and facilitated by the trustees attending.

 

Last but not least, Stewart Edwards a Birmingham based CLL patient shared his personal and moving CLL Journey from diagnosis, through treatment and the impact on his life.

 

Two representatives from CLLSA’s sister charity LeukaemiaCare were in attendance The Conference was held in the conference centre at Aston University. Good facilities and support was provided by the conference team.

 

59 out of the 60 attendees booked turned up with donations amounting to five hundred and twenty-five pounds.

 

A full report on the Conference is available below together with the videos and slides of the presentations. 

 

Marc Auckland Trustee and Birmingham Conference Chair