European Aniridia Leadership Academy

Registration opens at the Blique by Nobis hotel
Address: Gävlegatan 18
Networking opportunity until lunch

Lunch at the hotel restaurant Boketto

Gather in the hotel courtyard for a 10-minute walk together to the venue.

The European Aniridia Leadership Academy takes place at Birkagården.
Address: Karlbergsvägen 86B
Room: Matsalen, 4th floor

Welcome session – the leaders’ speed date

There is a time to understand and there is a time to meet. Sometimes it is
difficult for visually impaired people to manage new spaces and people
and so it is hard to approach a conversation from out of the blue or to start
shaking hands with unknown people. Recognizing this, our Academy
introduces a fresh approach to our initial gathering.

Session moderator: Matteo Castelnuovo, Vice President of Aniridia Italy

Coffee break

What is the European Aniridia Leadership Academy?

In September 2023, the organizers of the European Aniridia Conference
2024 had a meeting to think about a new way to involve and engage
young people within the event. After various discussions on this topic,
they thought to create a 3 days meeting where a selected group of young
people aged between 13 and 25 years could have the opportunity to learn
new skills both for managing their daily lives and for getting a better
understanding of what it means to collaborate with their national Aniridia
associations. With great excitement, we proudly present the first edition
of the EALA.

Speakers:

• Barbara Poli, President of Aniridia Europe – Introduction
• Irma Byle, President of Aniridia Lithuania and Aniridia Europe’s responsible for the Erasmus+ “Together for inclusion” project

Guest from Aniridia Europe:

• Marjorie Poeydomenge, Board Member of Géniris and Aniridia Europe

Closing session

Free time and time to travel to the Stockholm City Hall

Meet-up and check-in at Stockholm City Hall courtyard
Address: Hantverkargatan 1

Welcome and buffet dinner at Stockholm City Hall

The first day dinner will be hosted by the City of Stockholm and the
Region of Stockholm in one of the most symbolic locations of the Swedish
capital. A great place to meet and talk about the day and get the
opportunity to eat typical Swedish food and beverage.

The venue room Matsalen opens

Morning reflections

Every day we wake up and think about how we can do what we have to
do, but rarely we think about how much we are lucky to wake up and have
the opportunity to have a good quality of life. A status that someone has
built for us with effort and hard work, trying to teach us the importance to
smiling, fighting, winning, losing, falling and standing up again and again
without giving up and learning to face difficulties in the right way. This is
a fortune we need to share with other people to complete the circle of life
in order to make a better world.

Speaker:

• Matteo Castelnuovo, Vice President of Aniridia Italy

Morning reflections

Becoming a superhero: the power of sports
Three stars, three real superheroes who everyday train themselves to be better both under a personal and sports point of view. They are champions. They are serial medal gold hunters. But they are also humans and visually impaired or blind people. They are winners, but also imperfect. So, how can they manage the balance? What are their advices to be a winner, remaining yourself and keeping helping people around you?

Speakers:

• Veronica Tartaglia, Italian and European fencing champion
• Gianmaria Dal Maistro, Paralympic gold medalist in 2006 Turin Winter Paralympic games
• Ben Goodrich, Paralympic silver medalist in 2020 Tokyo Paralympic Games

Guest from Aniridia Europe:

• Denice Toews, President of Aniridia Germany and AE Board member

Coffee Break

Life is a matter of challenges

Since our birth, as humans, we need to face challenges. We need to stay
tuned to find new solutions with the aim of achieving a better quality of
life. Sometimes we need to do it just with our own strength, but
sometimes we need to ask for an help. In this session Daniel Egido will
give us some advices to analyse, face, manage and win challenges of our
daily personal and professional lives.

Speaker:

• Daniel Egido, author of the book ”Manual de combate del opositor” and Head of Service at the Spanish Ministry of Economic Affairs and Digital Transformation

Guest from Aniridia Europe:

• Tord Håkonsen, Aniridia Europe Chief Treasury Officer

Lunch

Free time networking

Daily life comparisons

When we look at our daily life, we are used to thinking that it is similar to
the life of everyone else, and we convince ourselves that everyone can do
the same things and approach the world in the same way. But it isn’t so.
When we look around we always need to think that every life is different,
complicated and hard to understand. We need to change our point of view
to understand what we have around us and why things are going
differently from our way of mind. We need to modify and diversify our
approach in order to be flexible and to have the real chance to create a
good connection with people, things, nature and spaces. But how can we
do it and how can we train ourselves for it everyday?

Speaker:

• Sølvi Ørstenvik, Aniridia Norway Board Member

Guest from Aniridia Europe:

• Katie Atkinson, President of Aniridia Network and AE Board Member

Coffee Break

Leading on accessibility, enabling success

When we discuss accessibility today, our thoughts instinctively turn to the
digital realm. This immediate association is made possible by the
interconnectedness facilitated by the Internet, smartphones, tablets, PCs,
and the broader digital landscape, alongside the myriad devices
propelling our world forward. Over the past two decades, digitization has
arguably been one of the most transformative developments, narrowing
the gap for visually impaired and blind individuals in both personal and
professional spheres. However, like any innovation, digitization brings
both opportunities and challenges. It’s crucial to thoroughly understand
these dynamics, effectively manage them, and continually seek new
approaches to problem-solving and assistance. So, what are the key
considerations in this regard?

Speaker:

• James Buller, Accessibility Consultant and Aniridia Network trustee 

Guest from Aniridia Europe:

• Galina Gening, President of Aniridia Russia and AE Board Member

Fly away through words, sounds and voices

Every time you go out, every time you go in. Every time you make a trip,
every time you stay at home. In every moment of your life you need to be
focused on what is happening around you. This attention requires to be
trained and to struggle to fully understand situations. Whenever you talk
to a person, whenever there is silence around you. Every time you walk on
a side walk, every time you cross a street. Every time they ask you
something, every time they point at you in a direction. Every time you find
yourself in the midst of confusion, every time you have to locate a point in
the void. You must always have a compass. A North of yours that allows
you not to get stressed, and to find a useful solution, even and above all
asking for help. But how can you do this in the safer and better possible
way?

Speaker:

• Matteo Castelnuovo, Vice President of Aniridia Italy, Radio and TV Host, Podcaster, Journalist and AE Digital Team Leader

Guest from Aniridia Europe:

• Elena Tsoneva, President of Aniridia Bulgaria and AE Board Member

Free time

Dinner at the hotel

Challenge workshop: being a volunteer is a matter of responsibility

When you are part of a non-governmental organization, and you are a
volunteer, sometimes you think that is not important if you do something
or not, or if you don’t respect timing and objectives to reach. But this is
not true. All the things you do are important and you are responsible for
them. Everything you do has an impact on the others and there are a lot of
people who can benefit or be harmed from your actions and decisions. In
this workshop we will try to make you understand what it means to
create and manage a project and how it is important to learn to be
responsible.

Speaker:

• Matteo Castelnuovo, Vice President of Aniridia Italy

Coffee Break

Why and how to promote research on aniridia

When you are in a non-governmental organization you should not think
solely about the present circumstances, but also in preparation for the
future. You always need to remember that your activity has to be focused
on improving the quality of life of your targeted people. Being able to
develop a good network of specialists, doctors, researchers and opinion
leaders is crucial to build an effective ecosystem of professionals and
entities who can develop new research studies and innovative therapies
and treatments for Aniridia. The relationship with institutions, hospitals
and universities is also a fundamental brick to keep the organization up to
date on scientific and political news that can be essential to grow under
multiple points of view. But how can we do this in the best possible way?

Speaker:

• Rosa Sánchez de Vega, Former President and Honorary member of Aniridia Europe

Guest from Aniridia Europe:

• Ivana Kildsgaard, President of Aniridia Sweden and Aniridia Europe Board Member

Closing session by Barbara Poli, President of Aniridia Europe

Time for a walk back to the hotel

Lay summary at the scientific conference

Closing lunch at the hotel