Saturday 20 June, 7:30pm via Google Meet – Sign up

Learning your child has aniridia brings a range of thoughts and emotions. The effects on parents are not talked about enough, especially regarding men. Join us for an evening to mark Aniridia Day and explore parenting topics with 3 short talks and an open discussion for everyone.

Most of our parent members are mums – so this is a special invitation to the dads in our community – and for mums to get their partner to attend alongside them. And, patients, tell your parents to come. Join to hear fathers’ stories, and perhaps, share your experiences as a parent too. Everyone else is, of course, very welcome too.

What to expect

We’re delighted to welcome three speakers, each bringing a different perspective. Each talk will be about 10 minutes.

Harriet, Researcher

Harriet, an MSc Genetic Counselling student from Cardiff University, will be introducing a research project she’ll be carrying out with Aniridia Network. The study is looking at “What is the impact on family members of the diagnosis of aniridia in a child, and what would help?“

Later this year Harriet will be recruiting parents and other family members for interviews about their experiences. She will explain what the project involves and how you can take part. This is a fantastic opportunity for you to directly shape research that could improve support for families.

Mark, sighted father: “Looking Back: Half a Lifetime with Aniridia”

Mark, 62, is the father of Harry, 29, who has aniridia. He will reflect on what he’s learned over almost three decades of supporting Harry — from diagnosis through childhood, school, and into adulthood — and the highs and lows along the way.

Simon, aniridic father of aniridic son

Simon, 43, will share what it’s like to navigate aniridia from both sides, as someone having it and bringing up a child with it. His son is going through many of the same things he did growing up. Yet the world has also changed and mnay of the challenges new or differnet.

Conversation

After hearing from our speakers, we’ll open up for a group discussion. We hope Mark and Simon’s stories will encourage you, especially dads, to share your fears, approaches and recollections of parenthood, and family life with aniridia. There’s no pressure to speak; you are welcome to simply listen, as well as join in with questions, comments, and stories of your own.

If possible the three talks will be recorded and shared on our YouTube channel afterwards. The discussion afterwards will not be recorded to enable open conversation in private.

Why now?

There are 3 important adjacent dates that we want to celebrate together, while leaving space for family gatherings on the Sunday:

• Nystagmus Day (20 June)
• Aniridia Day (21 June)
• Father’s Day in the UK (21 June).

How to join

We’d love to see as many of you there as possible to mark Aniridia Day. Sign up to get the link to join us on Saturday evening.

If you know of a parent or carer, particularly a man, who would benefit from attending, please encourage them to sign up.

We are looking forward to a warm, honest, and hopefully inspiring evening together.