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RI Summer Newsletter 2020
RI has published its Summer newsletter for 2020, detailing the progress and events we have been involved in over the course of the year, focusing specifically on the activities of its members:
Click on the link provided to read the full newsletter:
RI Membership Updates
Retina Australia
To celebrate National Volunteer Week 2020, Retina Australia had the pleasure of interviewing dedicated volunteer, current member & former president of Retina Australia, Graeme Ferguson.
Graeme was the foundation president of the Retinitis Pigmentosa Group in Queensland which began in 1989. Diagnosed with retinitis pigmentosa (RP), he set out to connect with those who also had RP and other inherited retinal diseases (IRD). Graeme and his small team of volunteers set out to educate the optometry & ophthalmology sector on the importance of funding research into IRDs and finding cures. Throughout the journey, Graeme and the team connected with over 300 people living with an IRD across the Queensland region.
“We often called our members for a chat, offering support, and providing advice on managing their daily routine if they were struggling. People felt better knowing that our organisation existed, that their condition was important,” says Graeme. Now retired, he continues to social events hosted by Retina Australia, such as the Friends of Retina Australia Coffee Group in Queensland, which he firmly believes is the most important aspect in “ensuring that people stay connected with others who understand what it is like to live with an IRD.”
Thank you, Graeme, for your inspiring work throughout the years and to all of Retina Australia’s volunteers who have given their time to support people living with inherited retinal diseases.
Retina Brasil
To support its members in these difficult and uncertain times, Retina Brasil organised a free and online support service to help them to build self-esteem, learn about how to prevent eye diseases and improve their overall health and find solace in their lives while living with a visual impairment. “Journey beyond the Horizon” commenced on May 18th with a session every day for 21 days, and was a very successful event, which the entire community found to be an invaluable support and source of optimism in these trying times.
Additionally, Retina Brasil are organising their annual seminar on Usher Syndrome to raise awareness about Deafblindness, and will be made available to everyone who is interested for free online. The event is scheduled for 19th September 2020 and Retina Brasil will be releasing more information about how to register in the coming weeks and months on the Retina Brasil website.
Fighting Blindness Canada
Fighting Blindness Canada (FBC) are organising an array of webinars and pre-recorded sessions via View Point, FBC’s new virtual education series. View Point bring the latest in vision research which is of interest to the retina community. Such topics for discussion include; gene therapy, pharmaceutical treatments, age-related vision loss, and inherited retinal disease. Participation in each of these webinars is free and more information about registration can be found on the Fighting Blindness Canada website.
Additionally, Fighting Blindness Canada are running their national Cycle For Sight event online this year to unite riders from coast to coast on Saturday, June 20th 2020. Registration for the event is free and you can participate indoors or outdoors while abiding by social distancing measures, or by setting an alternative fitness goal such as running, walking or skipping. The choice is yours! Register for Cycle For Sight 2020 here!
Retina ry/Finland
The Retina ry Youth Committee are eagerly planning for their annual gathering this summer following the success of last year’s event, where youth members of the retina community can meet, build friendships and become an integral part of a wide reaching and welcoming community. This year’s event will proceed in a virtual manner on Zoom and the organising committee are determined that this year’s gathering will be equally as successful and enjoyable as last year.
Additionally, it has been decided that the Retina ry Spring meeting which was cancelled due to the coronavirus pandemic will be held in conjunction with the Autumn meeting on Saturday, October 24, 2020 in Seinäjoki at Hotel Scandic, Kauppakatu 10.
Retina France
Last February, Retina France organised a very successful “Lunch Break” exhibition and wishes to extend its gratitude to Raymond Filippi, initiator of the project with the team of the Departmental Council and starring chef Pierre Reboul, who entertained 48 guests with thirteen dishes and many surprises. This unique experience challenges guests to enjoy foods and flavours without their sight, using blindfolds and using dim or no lights.
A very enjoyable experience for all, this event also serves to raise awareness around the challenges that the visually-impaired and blind community face on a daily basis, with tasks such as dining and communicating without vision raising some unique challenges for many. In total, Retina France raised 3300 euros and the generosity of all who donated is sincerely appreciated.
Pro Retina Germany
At the start of May, Pro Retina Germany released a short film to portray the unique challenges that many people living with progressive retinal dystrophies experience in their daily lives. This documentary, which describes the reality of vision loss from the perspective of three people living with Stargardt Disease, Retinitis Pigmentosa and Age-related Macular Degeneration, depicts the many obstacles faced by the community at large.
Each of the three individuals talk openly and honestly to describe their personal experiences, addressing commonly asked questions relating to their initial reactions on receiving a diagnosis, as well as the onset and severity of their symptoms which compromise their sight and independence. Additionally, each of the three participants describe how being a member of Pro Retina benefited them immensely during their toughest times and outline their aspirations for the future.
The full video is available to watch on the Pro Retina Germany website.
Retina Iceland/Blindrafelagid
In late May, Blindrafelagid made an agreement with the town of Hafnarfjarðarbær to make tourism and transport services more accessible for its residents who are diagnosed blind by the Service and Knowledge Center for the blind, visually impaired and persons with integrated visual and hearing impairments. Through this initiative, each person will receive an electronic card which can be used in taxis with the user’s basic cost share included with the local bus payment and will assist them immensely in their daily life, while also helping them to maintain their independence. Applications to avail of this service can be submitted at www.hafnarfjordur.is.
The Blind Association together with the Blind Association in Norway and Liechtenstein have also been assisting the Bulgarian organisation in a project called “Vision for vision”. The objective for this project is to raise awareness around the state of retinal and visual health in Bulgaria, through highlighting the challenges facing people living with visual impairments in accessing eye care and outlining why the rates of visual impairment and blindness prevalence continue to rise. An initial report on findings was published in January 2020, which you can read here.
Fighting Blindness Ireland
Target 5000 is a key priority and investment for Fighting Blindness Ireland. It started life as a research study, expanding in recent years into a larger programme delivering clinical and genetic services to everyone in Ireland living with an inherited retinal degeneration (IRD).
Earlier this year, key research outcomes were published in a scientific journal. The paper, entitled ‘Findings from a Genotyping Study of Over 1000 People with Inherited Retinal Disorders in Ireland’, is the result of the generous participation of people living with an IRD and many years of hard work by the research team at Trinity College Dublin. Analysing over 1000 DNA samples, Target 5000 research has shed light on the genetic landscape in Ireland and identified the disease-causing gene in nearly 70% of study participants. These research grade results are now undergoing clinical validation.
This study highlights the high standard of researchers in Ireland and their significant contribution, at a global level, to understanding inherited retinal degenerations.
A full breakdown of the key findings is now available on the Fighting Blindness website.
Retina Italia Onlus
To support people looking for answers about retinal conditions, Retina Italia Onlus have compiled a series of informative videos which are available for everyone to watch here. These videos aim to educate and inform people about retinal conditions, how they may develop and how they can best manage their condition, as explained by a clinician. Retina Italia Onlus sincerely thanks all who have donated to the 5 x 1000 funding initiative. Through this, the organisation can continue to support genetic and clinical scientific research within the retinal field, finance scholarships for young researchers and aid and prepare medical specialists for the future.
Japanese Retinitis Pigmentosa Society
The Japanese Retinitis Pigmentosa Society (JRPS) online seminar on Genetic information and Retinal Genetic medicine originally scheduled to take place on Saturday July 11th has been postponed to November as a result of the coronavirus pandemic. A new date and time for the seminar is being decided upon once confirmed, it will be announced on the JRPS website.
Retina New Zealand
In January 2020, Retina New Zealand’s youth group organised its first custom cane creation day, following on from its cane designing event in October 2019 which marked International White Cane Awareness Day. The event was a huge success which featured a wide array of inventive designs and new-found friendships! The Retina New Zealand youth group are already organising their next “Customise your Cane Day” so if you didn’t attend the January event, be sure to register for the next social occasion. Make sure to visit the Retina New Zealand Inc website regularly for updates and information about how to register.
Nederland Oogveriging
For the third year in a row, Oogvereniging is supporting the “Keep the line free” campaign, which raises awareness of the importance of pavement guiding lines and ribbed floor tiles, for people living with visual impairments and trying to navigate through public spaces safely and independently. This campaign has grown each year to highlight the need for these guiding lines, as it is estimated that 56% of people are unaware of their importance and occupy them unknowingly. Since April, sidewalk tiles which feature the campaign icon and text “Keep Free” have been available for purchase and have already been installed in the municipality of Zaanstad, to ensure that these public spaces are more accessible and welcoming to people with visual impairments.
Oogvereniging are also arranging virtual networking sessions to brainstorm together about how life will change for people with visual impairments after COVID-19, particularly in a society in which physical contact may be limited. Work-related changes will also be discussed at these events to support jobseekers find a suitable job in line with these new measures. More information about these virtual events can be found on the Oogvereniging website.
Retinitis Pigmentosa Foreningen i Norge
Since May 18, 2020, Norwegian Blind Association MediaLT and RP Foreningen i Norge have been offering free assistance to the visually impaired community on maximising the use of their smartphones and tablets. While screen readers, screen magnification and other accessibility features allow people with visual impairments to use technology, many smartphones and tablets don’t have the same auxillary technology, and so extra support is required. This is a really fantastic initiative which aims to make this a beneficial service for beginners and experienced users alike.
Pakistan Foundation Fighting Blindness
Pakistan Foundation Fighting Blindness (PFFB) are continuing their work of establishing accessible computer labs and organising training workshops on modern assistive technology, capacity building at Government Special Education Centers and community organizations for students and young people living with visual impairments. To date, PFFB has established accessible computer labs at Government and private institutes for the visually impaired in Lahore, Multan, Peshawar, Karachi, Mirpur Azad Kashmir, Attock, Swat, Abbottabad, Quetta, Muzaffarabad and Gujranwala. PFFB also organises regional training workshops for visually impaired students and teachers at special education Institutes.
PFFB are also working on their IT Center Project, the main objective of which is to provide people of different ages who live with visual impairments the opportunity to enhance their computing skills, art and craft jewellery making skills and cooking skills, so that they can have fun, learn and prepare themselves for working life.
Retina South Africa
Retina South Africa (SA) held their annual Dis Chem Ride For Sight on 16th February 2020, hosted in the city of Ekurhuleni. This year’s event garnered huge participation, with over 4500 cyclists taking part in the event. It was inspiring to witness large numbers contributing to such a worthy cause, with all proceeds from the Dis Chem Ride For Sight event going directly towards funding Retina SA’s research project at the University of Cape Town to identify the genetic causes of retinal degenerative conditions.
Additionally, Retina SA are involved in the first clinical trial for a rare and inherited retinal disease (IRD) – Stargardt Disease, undertaken in South Africa. This international multi-centre study will investigate the safety and effectiveness of Emixustat to prevent the accumulation of a toxic waste product called lipofuscin in the retina, which is a common feature of Stargardt Disease. Dr Jeffrey Gregory, Vice President of Clinical Development and Medical Affairs at Acucela Inc. USA remarked that the manner with “which the study was recruited and is being conducted is exemplary”. Among all trial sites, Retina SA has the leading number of patients who fulfilled all clinical and genetic criteria necessary for inclusion in the trial.
Retina FARPE
Each year, FARPE organises a travel and spa program specifically for people with visual impairments, designed to promote independent living, make friends and be a very relaxing and rewarding for all who attend. This year’s trip to the cities of Teruel and Cuenca in early May was postponed due to COVID-19 but has been rescheduled for 9th September 2020. More information about this event can be found on the FARPE website, where future updates regarding registration for the upcoming trip will also be published.
Svenska RP-Föreningen
Svenska RP-Foreningen cancelled their Spring days event arranged for 18th – 19th April, due to the COVID-19 pandemic. However, the organisation is optimistic about following through with their two-day Autumn meeting at Sundsgården November 7th-8th instead. More information regarding the Autumn meeting will be published on the Svenska RP-Föreningenin the coming weeks, so check for regular updates!
Retina Suisse
Retina Suisse have founded the Retina Suisse telephone café to reach out to its members and engage with them during these challenging times, even though many of their events and conferences have been cancelled. Many people are experiencing feelings of isolation, loneliness and anxiety and this initiative helps to alleviate many of these concerns. The telephone café runs every Monday from 2pm to 3pm and every Thursday from 10am to 11am. You can sign up to join these events by visiting the Retina Suisse website.
This year, Retina Suisse is asking its members to complete their voting form in writing or online and complete this task by June 30th 2020. The results will be posted on the Retina Suisse website on July 15th, 2020.
Retina Taiwan/Retinitis Pigmentosa Taipei
Retina Taiwan are running a video competition for its members, with the aim of raising awareness around retinal dystrophies and to highlight the obstacles that people with visual impairments experience, in addition to outlining the importance of regular check-ups and treatment intervention. The video clip should be between three to five minutes and should be submitted by 30th June. First prize is 50,000 yuan, second prize is 20,000 yuan, the participation prize is 10,000 yuan, and the popularity prize is 20,000 yuan. There are also a number of other generous awards which you will be in contention for, once you make an entry! Specific details about the video and where your entry should be submitted can be found on the Retina Taiwan website.
Retina UK
Retina UK’s Manchester Information Day focusing on inherited retinal dystrophies (IRDs) and Usher Kids UK Family Event organised for 23rd June and 4th July respectively have both been cancelled due to disruptions caused by the COVID-19 pandemic. Following government and Public Health England advice, Retina UK made the decision to postpone their events to a later date.
Retina UK continue to offer assistance to people living with IRDs via their Retina UK Helpline and Talk and Support Service, which were established to support people who couldn’t attend live events, but are particularly beneficial in these challenging times. Further information about how to engage with the Retina UK Helpline or Talk and Support Service is available on the Retina UK website.
Foundation Fighting Blindness:
In May, Foundation Fighting Blindness announced the launch of their new and improved My Retina Tracker Registry, to further improve the experience of patients and professional engaging with this data library. The My Retina Tracker Registry is a research database and invaluable resource designed for people living with Inherited Retinal Diseases (IRDs) and research communities, to provide de-identified information relating to over 20 retinal degenerative diseases, which will help accelerate the development of treatments and cures for a variety of retinal diseases.
Additionally, this data serves to provide an insight into the impact of IRDs on people’s lives, the genetic factors which influence disease onset and the nature of their progression. As a member of the My Retina tracker registry, patients can also be recruited for participation in research and clinical trials investigating treatments and cures designed for their condition.
At the launch of the updated registry, which includes new and improved accessibility features to support the user navigate through the site, as well as simplified data entry and improved security to protect this confidential information, Brian Mansfield, PhD, executive vice president of research and interim chief scientific officer remarked “From the start, we have been strongly committed to security of privacy coupled with ease-of-use for both patients and professionals. These enhancements are part of our continual process to maximize the registry’s usability and efficiently integrate it with our genetic testing programs.”
Foundation Fighting Blindness offer high quality genetic tests and genetic counselling to people living with IRDs through their My Retina Tracker Program and are made available at no cost to the recipient.
The My Retina Tracker Registry is for people living in the United States, with a clinical diagnosis of an IRD, and can be joined on the Foundation Fighting Blindness website.
Retina International Choroideremia Committee
The 4th European Choroideremia Patient Conference is scheduled for 2nd – 4th October 2020 in Wiesbaden, Germany. This year’s event will discuss the current state of research into, and development of a treatment for Choroideremia. Additionally, the European Choroideremia Patient Conference will provide patients and attendees to share experiences, develop relationships with other people in the Choroideremia community and contribute towards the progression of research in the field, so it is not to be missed! The official invitation from the organising committee, which provides details about registering for the event, can be accessed here.
Retina International Usher Syndrome Committee
International Usher info Symposium scheduled for 26-27 June 2020 in Paris, France, is postponed
Details will be announced as soon as possible and we will keep you updated via the Retina International website. The Scientific & Patient Sympsoium was organised by Fondation Pour l’Audition and Fondation Voir et Entendre in the framework of the LIGHT4DEAF project dedicated to Usher syndrome. http://pro.usherinfo.fr/2020-international-usher-info-scientific-symposium/
USH Connections Conference – Usher Syndrome Coalition 10-11 July 2020 in Austin. TX, United States, online
This year’s USH2020 Connections Conference will be a virtual event, the in person event is postponed to 9-10 June 2021 at the same venue. https://www.usher-syndrome.org/ush2020.html