We need your help to make Aniridia Network UK more effective, stronger and successful These are the ways you can play your part. If you would like to do any of the things here or have any other ideas please contact us to talk about it more
Tasks
One off
- Organise a regional meeting (could be an aniridia component to a NBCS family weekend)
- Write a blog post
- Interview someone for an article/podcast/video
- Write an article on a subject (including research where necessary) for our resource bank to help others in future
- Research grant funding
- Compile text for an online FAQ
- Recruit a doctor to act as our expert reference and reviewer on medical matter
- Recruit a person to act as our expert reference and reviewer on education matter
- Recruit a person to act as our expert reference and reviewer on welfare system matters
- Recruit a patron
- Host a committee strategy day
- Assist with planning/development (Drupal)/design of our next website
- Record (and edit etc) audio/video of our events
- Take photos at our events
- Collate a list of doctors experienced with aniridia
- Anonymise Harry’s ‘pupil passport’ to make a template for others to use
- Research iris hypoplasia and the extent to which we should cater and reach out to families with it.
- Compile a “new parent’s information” pack
- Conduct online survey of symptoms, needs and assistance received
- Lead the early diagnosis campaign
- Organise a petition of patients, families and doctors to get the RNIB to correct their aniridia factsheet
- Create photo ‘demonstrations’ of aniridia symptons.
- Attend Royal College of Opthalmology conference tp educate more doctors about aniridia (and similar events)
Ongoing
- Membership management – particularly renewals and gathering of more data
- Member recruitment – including finding new people with aniridia
- Public Relations – raising awareness in hospitals and/or dealing with the media
- Annual meeting coordinator
- Fundraising coordinator – personal and/or corporate
- Newsletter and blog editor
- Liaison with International WAGR Syndrome Association and families with WAGR
- Improving links with similar organisation such as NBCS, Look, RNIB, Henshaws etc.
- Managing our social media presence
- YouTube
- Flickr
- Writing minutes of committee meetings
- Liaison with overseas sister aniridia organisations – including European Aniridia Network
- Volunteer recruitment, management and retention
- Support network coordinator
- Monitoring of medical/research news
- Publications designer
Trustees
The trustees lead the charity and ensure it runs properly. This is a legal responsibility and there is good practice to be followed. For more details read the Charity Commission guidance on the responsibilities of trustees
Usually there are about seven people on the trustee board. The minimum is 3 and there is no maximum. There are three named trustee roles which have particular duties: Chairperson, Treasurer and Secretary
All the trustees are expected to attend monthly committee teleconferences and all should also perform one or more of the activities above.
Experts
We need people to refer questions to and give us a definitive answers we can use in our communications. Broadly these fall into the following categories.
- Medical
- Special needs education
- Welfare system
- Mobility and life skills
Aniridia Network UK
Beth Laskey
katieanuk
Jenny
James
Laura
Sinead
