Update Summer 2000
Dear Friends...
The Executive Committee of the International Patient Organisation
for Primary Immunodeficiency meets quarterly through a telephone
conference. Our last meeting was held on Thursday 4 May 2000 at
9pm, GMT. I thought that it would give you a flavour of our business
if I summarised what we spoke about during the two hour telephone
call.
Present for the call were Tatu Kulmala (Treasurer); Anneli Larssen;
Louise Carroll; Bob LeBien; Kees Waas; David Watters and myself.
Unfortunately Janne Remmel was not available for the call due to
a prior commitment.
After the formalities of welcoming and adopting Minutes we went
on to speak about Mrs LeBien's new book which will be available
within weeks, in a variety of formats, but mainly on the Internet
site. This book is in a simple form, which can be downloaded and
photocopied with no complications such as photographs and so on.
Please make sure you watch out for this exciting and helpful new
publication – it will help you and your organisation enormously.
We then went on to discuss money. Tatu Kulmala had just received
the first draft of the audited accounts and he confirmed that there
was income of £13k in 1999 against expenditure of £24k,
leaving a deficit of £11k. However, expenditure was well below
budget levels and there was currently a balance of £41k held
on deposit. Earlier in the year we received a most generous donation
of $35, 000 U.S. from the Immune Deficiency Foundation, and we are
grateful to the Board of IDF for their generosity and their affirmation
of IPOPI and the work we do.
We looked at our budget for 2000, which showed that a final budget
of £47k had been established for 2000. We agreed that there
was no cause for concern in the current financial year.
Soon we hope to have a full report of fundraising potential for
the year and we trust that will be encouraging.
We discussed problems of communication with our UK Bankers National
Westminster Bank plc. After discussion it was unanimously resolved
that all our business should be transferred with immediate effect
to the London West End Branch of the Bank of Scotland. It is essential
that we keep our bank accounts in the UK as we benefit very greatly
from UK charity laws.
We discussed our Humanitarian Aid Programme, and it was noted
that further help was being provided to Belgrade and that two months
stock of Ig remained. It was agreed that the first step to secure
longer term supplies should be through contact with local pharmaceutical
representatives. Only as a final step would IPOPI try to secure
further supplies. We were also deeply concerned with the position
in Russia, and hope to be able to re-establish contacts there soon.
You will all want to join with me in sending our sympathy and support
to Vladimir Smolin and his family following the death of his son.
Elsewhere in Update, you will find a reminder about the Jerusalem
Congress. Do contact David Watters in London if you want to see
a copy of our latest programme. We agreed that we should have a
session based on the International plasma supply situation, as it
affects immunoglobulins and that a specialist session is held on
CVID.
We very much hope that there will be some younger adults attending
Jerusalem. Tatu Kulmala is the person to approach for more info
As you may already know, we provide what services we can by purchasing
services from NMOs - principally the PiA in the UK.
Finally, I was very happy to report that I have invited Mr Moran
(IDF) to attend the forthcoming ABRA Annual Conference in Washington
DC to represent IPOPI. He will report back to the Board in due course.
We are grateful to Tom for agreeing so willingly to do this for
us.
We will meet next on Monday 7 August.
So there you have it – a rough idea of some of the things
that we speak about on our international conference call!
With very best wishes – Bianca Pizzera, Acting Chairman |
