Focus on young people and families at Aniridi Danmark’s Activity Day, November 2018

Aniridi Danmark is currently working on expanding their group of members, with a special focus on attracting young people and families with the condition. According to this goal, an Activity Day was organized in November 2018, where the activities were adapted to this purpose. It was great to meet the three families who participated, as two of them were new, as well as other members.

At the beginning of 2019, Aniridi Danmark has contacted DBSU (the Danish National Association of Visually Impaired Persons), in order to recruit persons with an aniridia diagnosis. Their hope is to gather a number of young people who can participate in the youth activities at the upcoming Nordic conference in Norway in June 2019.

Aniridia in the Bulgarian Ophthalmology Conference, November 23-25th, 2018

The conference “Novelties in Ophthalmology 2018” was held in Riu Pravets, Bulgaria, on November 23-25th,2018.

The main focus of this scientific professional forum was on “Cataracts”.

The topic was addressed in an innovative light, in all its various aspects: diagnosis, treatment, complications, prophylaxis and rehabilitation.

Cataracts and glaucoma are common in most patients with aniridia, with specific features and characteristics in every individual.

The reports that specifically discussed aniridia were presented by Assoc. Prof. Anna Popova (“From the Symptoms of Aniridia to Gillespie’s Syndrome”), by Maya Atanasovska et al. (“Molecular Genetic Studies to Bulgarian Patients with Non-Syndromic Aniridia”) and by Maya Atanasovska, a genetic scientist, under the guide of Prof. Draga Toncheva, with a dissertation work on Aniridia.

The reports “Genomic Diagnosis of Hereditary Eye Diseases ….” and “Dysmorphic Syndromes in Ophthalmology”, were presented at the Children Ophthalmology session, the latter is available for free at: http://nt-cmb.mu-sofia.bg:8080/jspui/bitstream/10861/1431/3/popova-1-30.pdf?fbclid=IwAR1BtKw3Pg

Associate Prof. Anna Popova´s article “Glaucoma and WAGR Syndrome”, was published in the “Bulgarian Forum Glaucoma” magazine, No2, 2018.

Aniridia Connection! The 9th National meeting of the Italian Aniridia association, October 12th-14th, 2018

Padua, North-East of Italy. An early autumn weekend that seemed rather late summer, for the mild temperature and the blue brightness of the sky. Under the domes and the steeples of the Basilica di Sant’Antonio, Aniridia Italiana held its 9th national meeting, attended by more than 120 people, among which around 60 persons with aniridia.

A meeting entirely dedicated to the creation of contacts and relationships, the transmission of knowledge and experiences, the confrontation between children, young people and adults, families and specialists, to seize all the opportunities offered by the network and to get involved without barriers and shyness; in short, it really was Aniridia Connection!

A great number of activities were offered to the participants;  dinners and free times gave the opportunity to talk in a relaxed and friendly atmosphere. The city of Padua, with its historical centre reserved to pedestrians and rich in art and history provided the ideal setting for walks and talks.

On Saturday morning, specialists took the floor to talk about access to healthcare, genetics of aniridia, clinical management of children and adults with aniridia. The format provided for a short presentation with the purpose to lay out the most important (and often critical) topics and then a lot of time for questions and answers, the questions that parents never have time to ask during medical examinations at the hospital. In the second half of the morning, a full session was dedicated to ophthalmological, physical and cognitive rehabilitation for children with aniridia or WAGR syndrome. All the specialists added to their relevant knowledge and competence a human and empathic approach that was greatly appreciated by the participants.

In the afternoon the focus moved to social inclusion, from school and University to sports and physical activities. We had an open discussion on the criticalities and opportunities at school and university, where all the participants brought their personal contribution and asked each other difficult questions, to find together some possible, realistic answers. Then we could listen to the voices of great champions, such as Gianmaria Dal Maistro, gold and silver medal, paralympic, world and national alpine ski athlete, and Veronica Tartaglia, national champion in fencing. Andrea Bellé, physical education trainer and expert, involved the participants in tough and tricky (and sometimes funny!) physical activities in order to make people understand the importance of being in good shape. In people with visual impairment, having a good coordination and balance control can improve mobility a lot and avoid serious risks.

Saturday was also the day of the Youth Programme, a parallel session dedicated to the intergenerational dialogue. The young adults with aniridia (18 to 25 years of age), supervised by adult experts, had prepared some games for kids with aniridia grouped by age, games that involved using their bodies to measure the room, touching and dragging each other, jumping, moving according to the music, and so on; the goal was to have fun while activating all the kids’ potential resources for movement and interaction. For older kids, the games were based instead on speaking, for example the game called “obligation and truth” forced the participants to do or say something in order to avoid a penance, with the purpose of helping them in expressing their feelings and needs. The afternoon brought about an inversion of roles: the young adults became the ones on stage, having to confront with adults aged 30 to 40. The format was that of “speed dates”: people sitting in couples formed by a younger and an older person, face to face, having 3 minutes to answer to each other the questions prepared by the organizers before changing the table and the person. Plain questions, at the beginning, but becoming more and more tricky and uncomfortable as the game progressed, in order to bring people out of their “comfort zone” and reach inner places where they’d never been before. A demanding situation, indeed, but that conquered the participants.

A Saturday full of words, contacts and emotions, that exceeded expectations and created a stronger link between people of different generations, in the certainty that you can help each other and have fun together at the same time.

On Sunday morning the General Assembly of the association was held. The president Corrado Teofili reported on activities and budget, and informed about the programmes for the next year, that were approved by the members. Barbara Poli and Thomas Abbruzzo reported about the 4th European Conference on Aniridia, held in Paris last summer, and on its outcomes.

The new Board was elected: Corrado Teofili, president,  Matteo Castelnuovo, vice president, Barbara Poli, delegate to Aniridia Europe, Laura Spitaleri, board member, were confirmed in their roles. Thomas Abbruzzo was elected in the board as delegate to the young sector. Veronica Tartaglia was appointed as person in charge for the events. All the other roles were confirmed.

And finally, a great surprise! Matteo Castelnuovo showed an exclusive interview he performed with Charlie Cox, the English actor that has portrayed Matt Murdock, the blind superhero in Marvel’s Daredevil TV series produced and released by Netflix. Cox accepted to tell his feelings and challenges in interpreting a blind character and what he has learnt about the possibility to overcome your limits by cultivating your personal resources. Let’s be inspired by this story of determination and self empowerment. After all, we can all become superheroes, if only we believe we can do it…