Aspergillosis Patients Support Outreach Meeting London June 2011 - Graham Atherton

Second outreach meeting, London
Led by Graham Atherton
Supported by
Georgina Powell, Marie Kirwan & Debbie Kennedy
NAC Centre Manager Chris Harris
Talks given by Philip Langridge & David Denning
National aspergillosis centre
UHSM
Manchester
Support Meeting for Aspergillosis Patients
Fungal Research Trust

Programme
2pm Graham Atherton: Welcome & Introduction
2.10 Phil Langridge: Active breathing techniques & exercise, benefits to patients (Physiotherapy)
2.45 Break: Tea & Coffee – your opportunity to chat with fellow patients and staff members
3.15 David Denning: ABPA & SAFS
4.00 Graham Atherton: Close

What is this meeting for?
For you to socialise with fellow patients
For you to receive support from NAC staff
We are here to answer your questions, feel free to approach any one of us
We are here to listen about what we can do better
We can use these meeting to assess our service, to ask for more help with research
We occasionally feedback results of the research already in progress
Fundraising for research (Fungal Research Trust)

What can you do for us?
Feedback comments & suggestions on what we already do.
What isn’t working?
What is working?
What do you need to know more about?
How can we improve?
What more can we do?
Help us with fundraising
The Fungal Research Trust

New Fungal Research Trust website

New FRT fundraising campaign
To fund a Postdoctoral scientist who will carry out work to increase our understanding of fungal diseases
1. Why Aspergillus causes disease, especially slowly progressive disease such as ABPA, bronchiectasis, chronic pulmonary aspergillosis and/or lung scarring.
2. What are protective factors for fungal infection? Why do some people with the same risk factors not get colonised or infected?
3. Why do fungi become resistant to antifungal drugs?
Target £150 000 which will fund research for 3 years

Raising the money
Lewis Fraser Himalayan run (100 miles) in memory of Steph Smith. Target £10 000
Gem’s little Gems. Target £10 000 this year
Christmas raffle 2010 raised £1500
A patient raised £250 last year making and selling greetings cards
2010 raised approx £13 000
Can you help?
Your ideas & time will be the lifeblood of this challenge
Sign up for our newsletter
http://www.aspergillus.org.uk/newpatients/donations.php

Current ideas
Campaign ribbons – cost us 75p each, donate what you can
Cook book
FUNGUIDE patient’s cookery book
Combining your recipes with ‘good news’ about fungi, how useful they can be
Any of your recipes including the use of any of the following:
Mushrooms, soy sauce, Quorn, Marmite, Stilton, Brie, camembert and so on

Involving you in our work
The Fungal Research Trust have appointed a new trustee who is a patient
Derek Stewart is to put forward the patients’ point of view to the board on a regular basis, eg with regard to research interests
Elisabeth Kershaw is working on behalf of patients by assisting with the formulation of future research proposals

Thank You
“The best chance we have of beating this illness is to work together”
Living with it, Working with it, Treating it
Fungal Research Trust

Programme
2pm Graham Atherton: Welcome & Introduction
2.10 Phil Langridge: Active breathing techniques & exercise, benefits to patients (Physiotherapy)
2.45 Break: Tea & Coffee – your opportunity to chat with fellow patients and staff members
3.15 David Denning: ABPA & SAFS
4.00 Graham Atherton: Close

Aspergillosis Patients Support Outreach Meeting London June 2011 - Graham Atherton

by Graham Atherton on Jul 27, 2011

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