As a charity Aniridia Network has a responsibility to ensure that we are governed and keep data about people properly. A key part of this is ensuring that the right people can vote to elect our trustees and decide important issues.
In coming weeks we plan to send you a email with a link to a form where you can:
- Check if the details we have about you are accurate and update them if not
- Confirm whether you are a Member or a Supporter of Aniridia Network
Our challenge
A lot of the information we keep hold about you could be out of date if you have for example moved house, changed phone number or married since you filled in our membership form. You could also have become an adult since a parent provided your details. We need to know if this data should be changed or deleted.
As discussed at our 2019 Annual General Meeting (AGM) it is currently unclear who should and should not take part in votes at our meetings. This matters because unless a minimum number/percentage of those eligible do take part, the voting is not valid. It is also important that the charity is controlled by the people whose needs it aims to meet, to keep the focus in the right place. Eligible people are referred to as Members.
The reasons are historical. Once-upon-a-time people paid to join our association as households. Later they joined as individuals including (child) patients to friends, relatives and professionals. Each of these had differing intentions ranging from: donating, to hearing news, to influencing the organisation.
Becoming a full legal body and the need to do voting remotely due to the pandemic has rightly forced us to address the issue of who among these are voting Members.
Our way forward
When discussing this issue, the trustees noted that at past AGMs (with some exceptions) votes were typically only cast by adults with aniridia and parents of children under 18 with aniridia. But of course everyone in our community is hugely valued and welcome to contribute.
Therefore we will be adopting the following simple arrangement for all those currently in our database:
- All adults with aniridia and up to 2 parents/guardians for children under 18 with aniridia will be voting Members by default.
- Children under 18 with aniridia will be non-voting Junior Members
- Everyone else will be assumed to be non-voting Supporters, but can apply to be a voting Member if they wish. This includes other relatives, donors, doctors and other profressionals.
Eligibility to vote will be the only difference between Members and Supporters. Supporters are very welcome to take part in the rest of the AGM and all our activities.
People will be enrolled as a Member/Supporter according the criteria above, unless you tell us you want to leave. However it would really help us if you checked your data and confirmed your wish to be a Member/Supporter.
When Junior Members turn 18 we will invite them to register themselves as a Member. We will also suggest that since they are no longer representing the child, their parents change from being Members to Supporters, but this will not be required.
To reduce the administration demanded of our volunteers, we propose that the period between needing to renew as a Member/Supporter is 3 years. The first period will likely end, for all current and future joiners, around December 2023. You can also leave at any time by contacting us.
We hope this feels fair and sensible. If you have any questions or comments contact us.
Our next AGM will be online on 1 August 2021 as part of the 2day European Aniridia Conference. We plan to invite Members to vote for trustees in advance, either online or by postal ballot. Stay tuned for details being sent to you.
What is your status and what do you need to do?
- Look out for an email from data@aniridia.org.uk about you, your child or partner.
- Follow the link in the email to display the information we have.
- Check the details and edit them if necessary.
Ensure the setting of Member or Support is what you want to be. - Submit the form.
If you do not wish to be part of Aniridia Network any longer contact us.
If you don’t received occasional messages from us we may not have your email address. We would prefer to send our communications and invitations to vote by email to save the cost and effort of posting them. If you are happy for us to do this, fill in our registration form.
If you have any questions or comments contact us.
We are very grateful to our volunteer Keith for setting up the technology for making the self-service data check possible and overseeing the process.
Other people
Do you know someone who should be a Member/Supporter but does not get messages from us? It may be that we do not have their email or postal address. Please invite them to fill in our registration form.
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