Thank you so much to everyone who joined international 2022 LHON (Leber Hereditary Optic Neuropathy) Awareness Day a free interactive live virtual event on Monday 19 September 2022 (13:00-15:00 CEST).
If you were unable to attend or missed part of it, you can watch it now;
We heard about an exciting research project into LHON and learn about rehabilitation when living with vision loss.
Learnt about a pioneering research study into LHON, and foundd about more about rehabilitation when living with vision loss at our free webinar. Join others living with LHON, carers, researchers and heath care professionals. During this interactive event, we had time to ask questions and engage in discussion.
Our LHON Awareness Day Webinar was facilitated by IMP’s Chair, Kira Mann. Paula Morandi, the founder of LHON Awareness Day joined the discussions and highlight the importance of raising awareness of LHON.
Associate Professor Raymond Wong from Australia, shared his innovative research on understanding the genetic signals that define retinal cells, and using cell reprogramming and stem cell technologies to study and treat retinal degenerative diseases.
Attendees had the opportunity to ask questions and discuss A/Prof Wong’s work.
We then welcomed Dr Krister Inde from Sweden, a leading expert in low vision rehabilitation. Dr Inde has LHON himself and has spoken around the world on the importance of rehabilitation. He explored the mental process of grief and acceptance of vision loss, using your vision and your senses, magnification correction and the importance of fulfilling your dreams.
Dr Inde welcomed questions and discussion about rehabilitation.
LHON Awareness Day is hosted by IMP. Thank you to the members of the LHON EU group who initiated the establishment of LHON Awareness Day in 2020.
Associate Professor Raymond Wong
Associate Professor Raymond Wong is a Principal Investigator at the Centre for Eye Research Australia (CERA), the University of Melbourne and a Guest Professor at Shenzhen Eye Hospital (China). He is a stem cell biologist with more than 19 years of research experience, specialising in cellular reprogramming and stem cells in eye research. He completed his PhD in stem cell biology at Monash University and was awarded a California Institute of Regenerative Medicine Fellowship to pursue overseas postdoctoral training at the University of California Irvine (USA), and a Visiting Fellow Award to train at the National Institutes of Health (USA).
In 2013, A/Prof Wong joined CERA with the support of a Cranborne Foundation Fellowship and subsequently established the Cellular Reprogramming Unit with the support of a MAWA Fellowship and a New Investigator Grant from the National Health and Medical Research Council in Australia.
Dr Krister Inde
from Sweden, a leading expert in low vision rehabilitation. Dr Inde has LHON himself and has spoken around the world on the importance of rehabilitation.
You can watch the past years' recordings here;
Thank you to all those in the global LHON community who joined last year's event on 19 September 2021.
2021 "The Importance of Technology for LHON Patients"
Technology can make an immeasurable difference to someone with LHON. It can enable vision impaired people to maintain independence, perform in jobs that otherwise would be inaccessible to them, excel in education, participate in social activities, and accomplish everyday tasks.
But keeping up with new technology can be challenging and time consuming. Michele Landolfo is an expert on the use of technology by vision impaired people. He shared key information about how technology can improve the quality of lives of people with LHON.
Michele was joined by members of the LHON community from around the world to discuss the impact of technology on their lives. They shared the successes they have had with different technologies.
During this interactive event, questions were posted and addressed by the speakers.
IMP has worked with experts in LHON to produce a brochure aimed at patients, their families and ophthalmologists. Please download it and share it with your eye doctor and with others to help them understand more about LHON.
The brochure is currently available in English and Italian. It will be translated into other languages where possible.