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Notice is hereby given that the 2020 Annual General Meeting of the Batten Disease Family Association will be held via Zoom video-conferencing on Saturday 12 June 2021 at 10:00.

Given that the Covid-19 restrictions are only in process of being lifted it is believed that it is important to hold an online AGM to allow business to be transacted soon after the publication of the Accounts.

(i) To participate you will need to register for a ticket at  A Zoom link will then be provided for access to the meeting via email.  You will also need a pc/laptop/tablet with a camera and microphone to “attend” and the ability to use Zoom.  If you do not have access to these resources, you may still be able to participate through a phone-in service.  

(ii) It is proposed that ONLY essential business shall be transacted following the Agenda below.  Individuals wishing to raise a question MUST submit their question in advance by Friday 28 May 2021 to  Where possible the Chairman, CEO and Treasurer will seek to answer those questions during their presentations.

(iii) Trustees: 
Zlatko Sisic (as Chairman) and Richard Whitbread (as Treasurer) stand for three-year periods.
Pauline Docherty has stood by her decision to formally stand down as a Trustee at this meeting but has indicated a willingness to continue in a role as Minutes Secretary for a few months.
Neil Dunford has stated that he is standing down at this AGM and will not stand again.
Other Trustees: Cath Sermon and Gareth Holmes will be due to step down at the next AGM and Bob Thompson and Simon Sewart will step down at the subsequent AGM.
There is a formal vacancy for a Secretary – please contact if you are interested.
There are also vacancies for other Trustees as we could usefully reflect the views of a wider spectrum of parents and others, again please contact:

There is a comprehensive briefing pack for Trustees, including Charity Commission and other guidance.  This needs to have been read and volunteers will need to confirm their willingness to stand by Friday 28 May 2021 by submitting a photo and biography, plus completed forms to Amanda to enable a further update to those registered to attend the AGM.

(iv) On-line meeting protocols shall apply, with ONE person speaking at a time and participants needing to catch the attention of the Chairman before speaking (by raising a hand on the software).  After you have been “admitted” to the meeting please ensure your microphone is turned on.  During the meeting centrally microphones will be muted and opened when invited to speak.  We would ask all participants treat each other with respect.

(v) Please note, it is intended that the meeting shall be recorded for minuting purposes. If you do not wish to appear in the recording, please ensure you switch your camera off. 

(vi) It is planned to send out the link and papers on Friday 4 June 2021.


Agenda of the BDFA Annual General Meeting

To be held online on Saturday 12 June 2021 @ 10:00


  1. Introduction and Welcome 
  2. AGM Minutes 2019 – To receive and approve the Minutes of the 2019 AGM
    These will be sent to those who register to attend the AGM. 
  3. CEO Review of the year2019-2020 
  4. Treasurer Financial Review of the year 2019-2020 
  5. To receive the report and accounts for the year ended 31 August 2020
    The Report and Accounts which cover items 3 and 4 have been circulated and will be resent to those registered to attend the AGM. 
  6. Trustees:
    a)          To acclaim Pauline Docherty’s contribution since co-founding BDFA.
    b)          To thank Neil Dunford for his service as Trustee
    c)          To appoint Zlatko Sisic as Chairman for three years
    d)          To appoint Richard Whitbread as Treasurer for three years
    e)          If there are additional Trustee candidates then details will be circulated to those registered to attend the AGM.
  7. To re-appoint Taylor Cocks as independent examiners for 2020-21 financial year. 


Date of Issue: 14 May 2021


That concludes the formal part of the AGM and based on experience it is anticipated that this will take under one hour.  Following closure of the formal AGM it is planned that there will be a less formal session enabling discussion of events subsequent to the year end and plans for the rest of the current financial year and years ahead.

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