Report of first meeting
Report on the meeting of Primary
Immunodeficiencies held at Red Cross Children’s Hospital, Cape Town 6 July 2001
Present:
Apologies:
WELCOME
and INTRODUCTIONS
Joy Rosario welcomed everyone to the venue on behalf of Professor Beatty who was
doing ward rounds, especially those who had travelled far to make the meeting.
Each person then introduced him/herself and gave something of their background
and interest in immunodeficiencies. Thanks were also given to Red Cross Hospital
for the use of the venue and also to Natal BioProducts for funding the airfare
of the two doctors, Dr Botha from KZN and Dr Loubser from Gauteng, also the
luncheon.
BACKGROUND to the meeting
A short Power Point presentation of the history of the previous initiative to
set up an association and the relationship between IPOPI, the PiA and South
Africa was given.
In summary, Greg and Sonja Wood attempted to set up an association (circa
1992).This failed on two counts a) lack of funds b) lack of support. Another
attempt was made after Sonja Wood was funded to go to the ESID/IPOPI conference
in Greece in 1998 but again the association did not materialise for the same
reasons. IPOPI funded Joy Rosario to go to the ESID/IPOPI conference in Geneva
in 2000 with the express purpose of an another attempt to be made to set up an
association. A development grant was awarded (seed money only – the association
will have to be self-sustaining) and it is to this end the meeting at Red Cross
came about. It is anticipated that with the help of the grant and also the
setting up of regional groups this initiative will be successful. Considering
the degree of under-diagnosis of the disease in South Africa and the unenviable
pressures the medical fraternity manage under in this country, an association of
this kind is essential.
THE WAY FORWARD
In summary the following, in keeping with the IPOPI aims of
communication, representation and service,
was decided,
The primary functions of such a committee, after having agreed on a name, a mission statement and a constitution, will be,
All of the above will only be
possible with a viable ongoing fund-raising campaign, the building of a national
registry of correctly diagnosed patients and good communication with all parties
involved.
NB. In order to qualify for IPOPI voting membership the organisation has to have
a constitution (reflecting that it is a national non-profit organisation)
approved by the IPOPI membership committee. Ours will be modelled on primary
immunodeficiency organisation of Ireland.
The main functions of these groups are to;
The grant has funded the
following, thereafter we are on our own:
Part 1: Basic setup costs including a website, local listserv (mailing list) and
logo/letterhead design
Part 2: The Cape Town meeting (airfares and/or accommodation)
Part 3: Launch of the regional groups
Part 4: Funding of printing of posters, pamphlets and booklets and postage
In the discussion regarding the way forward there were three significant issues
mentioned. Firstly, that a registry of patients is the first priority as it is
with these people that the association will function with and for. Secondly
‘mail shots’ to doctors are largely a waste of money as they receive so much
already via the post and thirdly, an article in the allergy magazine (suggestion
from Prof Potter) would reach a huge audience of doctors and would carry
credibility.
Further discussion was referred to the business session in the afternoon
Talk by Dr Michael
Loubser on his experience in Saudi Arabia
Dr Loubser gave an extremely illuminating Power Point presentation on his
experience with PID in the Middle East. He is fortunately back in South Africa
on a permanent basis and will be working closely with our resident doctors. This
meeting provided an opportunity for informal discussion amongst this group.
Medical Advisory Panel discussion
chaired by Sonja Wood
There were 21 questions in all and not enough time to do them justice. It was
agreed that the questions would be circulated to the people on this list with a
request for answers. A summary of the answers that are forthcoming will be used
in a
FAQ (Frequently Asked Questions) section
on the website and in the booklet.
LUNCH
BUSINESS :
Herewith a summary of the business matters
Present: Dr Michael Loubser
Joy Rosario
Sonja Wood
Hans Van Rensburg
Simon Coetzee
Lisa Coetzee
Apologies: Sheryl Shapiro
Pamela Lockley
Susan Marias
1. Name
of the new association
PiNSA (Primary Immunodeficiency
Network of South Africa)
2.
National committee
Joy Rosario – Chairman and Publicity
Simon Coetzee – Secretary (subsequently resigned, Sheryl Shapiro co-opted in his
place)
Dr Michael Loubser – representing the Medical Advisory Panel (MAP) (ML)
Sonja Wood was requested to accept a nomination to hold office (i/c fund
raising) but declined for personal reasons. Sonja agreed to let her members know
that PINSA was now an association and to encourage them to contact us. Sonja
also agreed that if we needed any help that she would be available but only on a
support basis.
It will be necessary to co-opt further people on a regional basis if not
nationally according to the need. Pamela Lockey in Cape Town is to be
approached, as is Sheryl Shapiro in Gauteng.
3. The constitution
of the PIA in Ireland was produced and adopted with the following amendments;
It was decided that
d) non-sufferers cannot be office
bearers, but they can become members
e) consultants can be co-opted to assist in projects but may not hold office
f) it will require a two third majority vote to enforce the vacation of anyone
holding office and an extraordinary meeting has to be called for this to take
place
4. Regional
convenors and medical advisors
Gauteng Sheryl Shapiro with Dr Loubser
KwaZulu Natal Hans Van Rensburg with Dr Botha
Cape Town Joy Rosario with Professor Beatty
5. Job descriptions
These were duly circulated as according to the IPOPI manual.
6. Regional launches
It was decided that the launches would happen on as soon as printed material
(booklet, posters etc) were available.
7. AGM
No date was set for this but it should be in the region of July 2002, possibly
in Gauteng in order to rotate the responsibility.
In conclusion, it was recognised that this association will depend on the co-operation of all involved, all of whom are extremely busy people and most are affected in one way or another, by the illness. There is the possibility of linking up with other local organisations and also the ongoing support of the NBI and existing overseas organisations. Kees Waas and the board of IPOPI are to be thanked in particular for this, as well as David Watters, Executive Secretary of the PiA.
CONSTITUTION OF THE PRIMARY IMMUNODEFICIENCY NETWORK OF SOUTH AFRICA
1) NAME
The Association shall be called the Primary Immunodeficiency Network of South Africa (PiNSA)
2) OBJECTIVES
2.1 The Association is established for the advancement of education and protection of health and in particular to provide in support, assistance and information to families with members having a primary immunodeficiency.
2.2 In furtherance of the above objects but not further or otherwise the Association
May:
(i) Establish a centre or centres for activities designed to advance the said objectives.
(ii) Provide or secure the provision of social services and educational facilities within the area of benefit.
(iii) Provide families with expert advice, lectures, meetings of parents and interested persons, discussion groups and contact with other groups and organisations
(iv) Promote public awareness of primary immunodeficiencies.
(v) Educate and provide a better understanding among professionals and persons who come in contact with families who have a member with a primary immunodeficiency.
(vi) Provide information on matters of health, and refer families in need of professional assistance to relevant statutory or voluntary agencies.
(vii) Procure to be written and printed, published, issued, distributed and circulated
Reports, periodicals, books, pamphlets, leaflets flyers or other documents.
(viii) Establish a branch or branches for the furtherance of the above objectives.
(ix) Promote and carry out or assist in so doing research, surveys and investigations and publish the useful results thereof.
(x) Co-operate to such extent as may be necessary with statutory authorities and voluntary organisations engaged in the furtherance of the above objects or any of them.
(xi) Raise and accept money by way of grants, donations, bequests, legacies or other lawful methods and give, donate or disburse grants and loans to such related organisations or projects as are by law deemed charitable PROVIDED THAT in the exercise thereof the Association shall not engage in any form of permanent trading.
(xii) Purchase, take on, lease or in exchange, hire or otherwise acquire any property
and any rights and privileges necessary for the attainment of the said objectives and construct, maintain and alter any building or edifices so necessary as aforesaid.
(xiii) Sell, let, mortgage, dispose or turn to account all or any of the property or
assets of the association.
(xiv) Invest the monies of the Association not immediately required for the said
objectives nevertheless to such conditions (if any) as may for the time being
be imposed or required by law.
(xv) Employ and pay any person or persons to supervise, organise and carry on the
work of the Association and make all reasonable and necessary provision for payment of remuneration to employees
(xvi) Recruit volunteers with relevant skills, for the furtherance of the above objectives
(xvii) Do all such other lawful things as are necessary for the attainment of the said
Objects.
3) MEMBERS
3.1 Families and individuals in the area of benefit without distinction of age,
nationality, religion or political affiliation, shall be eligible for membership of the Association.
3.2 The committee referred to hereafter shall by regulation prescribe the conditions
for and rights and privileges of members; and shall make regulations for the
admission to and terminate his or her membership shall have the right to state a
case against such proposal.
4) MEETINGS
4.1 Annual Meeting
The Annual General Meeting shall be held at such time not being more than 15 months since the previous Annual General Meeting, and place as the committee shall determine.
The business of the Annual Meeting shall be:
(i) To receive and approve reports on the activities of the past year from members of the committee
(ii) To receive and approve the audited accounts of the Association
(iii) To appoint auditors.
(iv) To elect the officers and committee according to such nomination and voting procedure as the Association may from time to time determine.
(v) To deal with resolutions and such other matters of which notice has been given to the committee and members.
4.2 Other meetings of the Association shall be called General Meetings (or in the case of alteration of the constitution or dissolution of the Association extraordinary General Meetings), and shall be called at not less than 14 day’s notice to members.
4.3 Extraordinary General Meeting
The Committee shall have the power to call a General or Extraordinary General Meeting and shall be bound to do so within 21 days of receiving notice in writing signed by not less than 10 members. The business to be transacted must appear on the agenda and no other business discussed.
5) MANAGEMENT
5.1 Except as provided otherwise in this constitution, the Association shall be
managed by a committee, consisting of a Chairperson, Secretary, Treasurer,
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5.2 The Committee so constituted shall have power to co-opt further members PROVIDED THAT the member of co-options shall not exceed one third of the total membership of the committee.
5.3 The Committee shall meet for the conduct of business, as they shall see fit, but
In any event shall meet not less than twice a year, be it face to face or via telecommunications.
5.4 Office bearers may not hold the same office for more than two years consecutively unless by majority vote of the committee at the Annual General meeting.
5.5 No more than one member of the same family group may hold office simultaneously
5.7 Consultants can be co-opted to assist with projects but may not hold office
5.8 A two third majority vote is required on any decision taken by the committee, including change of Office bearers, resignations not withstanding.
6) FUNCTIONS OF THE COMMITTEE
The Committee may inter alia:
6.1 Make such regulations as they consider appropriate for the efficient conduct of their and the Association’s business.
6.2 Appoint all such staff as they may consider necessary on such terms as to duties and remuneration as they may determine; employees of the association shall not be eligible to serve as members of the committee.
6.3 Establish sub-committees, consisting of members of the association or other persons, and shall determine their terms of reference, membership and duration, all such sub-committees shall make regular reports on their work to the committee.
7) FINANCE
7.1 All income of the Association, whatsoever derived, shall be applied to the charitable purposes of the Association and to no other purpose PROVIDED THAT nothing herein contained shall prevent the payment of legitimate out-of pocket expenses to members of the Association engaged upon the approved business of the Association.
7.2 The financial year of the Association shall run from 1 March – 31 February
7.3 The Committee shall open a bank account in the name of the Association and shall specify those members of the committee (being not less than two members of the committee authorized to sign cheques on behalf of the Association
7.4 The committee shall authorize the keeping of proper books of account, and shall designate responsibility for the preparation of an annual statement of accounts for submission to an Annual General meeting.
7.5 The statement of Accounts shall be made available for inspection by the members of the Association and the revenue commissioners.
8) ALTERATION OF THE CONSTITUTION
This shall be altered only by a majority of two-thirds of members of the Association present and voting at an Extraordinary General Meeting called at not less than 14 days
Notice to members for that purpose PROVIDED THAT no alteration shall be approved which would cause the Association to cease to be a charity at law. Any such alteration will be subject to the approval of the revenue commissioners
9) DISSOLUTION
9.1 If on the grounds of expense or otherwise the committee shall decide upon the
dissolution of the Association, a resolution to dissolve shall be considered by an Extraordinary General Meeting called at not less than 14 day’s notice to members for that purpose.
9.2 The Association shall be dissolved only by a majority of two thirds of members present and voting at such meeting.
9.3 Following a decision to dissolve, the assets of the Association shall, following satisfaction of all debts and liabilities, be transferred to one or more charitable associations having objects of similar of related to these of the association as determined by simple majority at such meeting.
10) TRUSTEES
10.1 The association may appoint and may terminate the appointment of not less than 3 people to act as trustees for the purpose of holding any monies or property belonging to the association.
10.2 The title to all or any such real and/or personal property, which may be required by or for the purposes of the association, shall be vested in the trustees who shall hold such property in trust for the association.
10.3 The trustees shall act under the instruction of the management committee who shall, subject to the approval and consent of the association as determined by a general meeting, have power to fill vacancies among the trustees.
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