Whether you’re navigating a recent diagnosis or supporting a child with a changing visual condition, this session will offer expert advice, lived experience, and practical support.
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.
Together, our panel will explore:
- What inherited, progressive sight loss means for children and families
- Emotional responses and how to process a diagnosis
- Tips for navigating education, EHCPs, and healthcare conversations
- How to talk to your child and family about the condition
- Updates on current research into treatments for inherited retinal conditions
- Lived experience of growing up with an eye condition that was changing over time
- Resources and support available from Retina UK, Stargardts Connected, and LOOK
This session 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.
Each session includes plenty of time for a Q&A, so please be sure to include your questions in the registration to be addressed by our panel of experts.
*Remember that your own clinician is the best person to advise on your family’s specific situation.
After the event, we will share detailed resources as well as a recording of the panel talk to listen back to and help you every step of the way.
You’ll need to register for the session before 11 am on the day of the event. This deadline is in place to help safeguard our online events. If you miss this deadline, please contact info@look-uk.org on the understanding that we cannot guarantee your participation.
Please note that there’s limited capacity for live attendees. When registering, let us know if you’d like to join the live event or simply receive the resources afterwards.
Don’t miss this chance to gain expert advice, ask questions, and connect with other parents and carers! Sign up today!
This session will be recorded and published on podcasting platforms, so if you contribute during the session, you consent to appear in the recording.
Meet the Event Facilitator
Elin Williams – LOOK Events Manager
I am the Events Manager at LOOK; I began as a volunteer mentor sharing my lived experience of VI with others. I am registered blind due to a condition called Lebers Congenital Amaurosis and Nystagmus. I’m a Braille and screen reader user and have just light perception now.
I grew up with sighted parents, siblings and wider family, but now at home, I live with my husband, who is also blind, my guide dog and our chaotic cat.
Meet the Guest Speakers
Kate Arkell, Research Development Manager at Retina UK.
Kate will give an overview of some of the services and resources offered by Retina UK, as well as a brief tour of what’s going on in research into treatments for inherited retinal conditions.
Bhavna Tailor – Parent, CEO and Co-Founder at Stargardt’s Connected.
Bhavna is the mother of a son with Stargardt’s Disease and is the co-founder and CEO of Stargardt’s Connected, a charity that helps to raise awareness, provides support and raises funds towards Stargardt’s research.
As a mother of a child with a progressive inherited retinal disease (IRD) and through her work with Stargardt’s Connected, Bhavna brings valuable insight into the journey of parenting a child with a progressive IRD. She will share some of the challenges she has faced, along with practical tips and strategies that have supported her along the way.
Meet the LOOK Mentors
LOOK Mentor Finlay
I’m Finlay. I was diagnosed with Leber’s Hereditary Optic Neuropathy (LHON) when I was 15, I’m now 23. I had very rapid degeneration, going from a strong visual acuity to counting fingers up close over the course of around three and a half months. LHON primarily affects the central vision, making it appear similar to a foggy bathroom mirror, and removing sharpness from the peripheral vision. In my case, I rely on the left side peripheral quite a lot.
After my diagnosis, I was invited to a pioneering clinical rescue trial where they attempted to use gene therapy to recover and slow my deteriorating sight. This testing and monitoring lasted five years. The fatigue and consequential blur effects of LHON became more pronounced three years ago, so it was another learning experience to discover how to manage that fatigue, additional blur, and its potential consequences going forward.
LOOK Mentor Kaltum
My name is Kaltum, I am a 21-year-old Politics and Sociology graduate from the University of Manchester. I was diagnosed with Stargardt’s, an inherited eye condition that affects the part of the retina that is responsible for central vision. Thanks to incredible support from teachers, QTVI and charities like Henshaws and LOOK, I have been able to access amazing opportunities and navigate challenges with confidence. These experiences have supported my journey through education and shaped who I am today.
LOOK offers a wide range of resources to support parents and carers as they navigate their child’s sight loss journey. From mental health support and self-advocacy skills to money management and more, our extensive database provides practical guidance every step of the way.