In this resource, our expert panel share their experiences and insights on the journey to diagnosis. Together, they explore how to support both your child and yourself emotionally, how to plan for the future with confidence, and what’s happening in the world of research and treatments.

Meet Our Panel:

  • Kate Arkell – Research Development Manager at Retina UK.
  • Bhavna Tailor – Parent, CEO and Co-Founder at Stargardts Connected.
  • LOOK Mentors Finlay and Kaltum sharing personal insights from a firsthand perspective.

This resource is aimed at empowering parents and carers with guidance on how to talk openly with their child after a diagnosis, provide meaningful support, and maintain a positive outlook for the future.

Speaker Bhavna Tailor, Parent, CEO and Co-Founder at Stargardt’s Connected, discusses:

  • Her family’s diagnosis journey
  • Explaining your child’s condition to them
  • The importance of adaptations and learning new skills
  • The impact of emotional support
  • Creating a community of peers
  • Planning for the future
  • Stargardt’s Connected

Speakers LOOK Mentors Kaltum & Finlay discussing:

  • Diagnosis
  • Managing parental guilt
  • How to talk to your child about their eye condition
  • Navigating research and treatment options
  • Thinking about the future
  • Finding humour in challenging situations

Speaker Kate Arkell, Research Development Manager at Retina UK, discusses:

  • Retina UK and their support services
  • Wellbeing and mental health
  • Genetics
  • Research
  • Studies and clinical trials

Q&A Session discussing:

  • Research studies specific to Stargardt’s.
  • How to support your child with night blindness when they go out at night.
  • How to talk to your child about progressive sight loss.
  • Guidance on how to talk to your neurodivergent child or child with learning delays about their progressive sight loss condition.

The panel’s shared message is clear: progressive sight loss will not stop your child from living a full, joyful, and fulfilling life.

“You may need to keep driving to find the next exit on the motor way and it might take longer and not be the route you expected, but you’re still headed for the same destination” Bhavna Tailor.

Resources

Stargardt’s Connected

Retina UK

“You don’t need to stop your plans, sometimes we just need to pivot” LOOK Mentor Kaltum.

We would like to say a huge thank you to our expert panel, Bhavna Tailor, Kate Arkell and LOOK Mentors Kaltum and Finlay, and to the parents who joined this session. We look forward to seeing you at the next Parent Support Group panel event.

Keep up to date with the latest news, events, and support from our Parent Carer Support Group by signing up to our newsletter. You can also find all upcoming PSG events listed in the Parents & Carers section of our website.

Parent/Carer Resource Database