Meeting of the the Russian Scientific Committee of the Interregional Support Center for patients with aniridia “Iris”, August 2018

The Russian Scientific Committee met in August 2018 and decided to write Clinical guidelines on congenital aniridia for the Russian Federation, as well as to start a general Register of patients with congenital aniridia in Russia. More information at:

http://aniridia.ru/ru/news/2019/01/17/avgustovskie-vstrechi-nauchnogo-komiteta-mcpba-raduzhka

The Spanish Aniridia Association signs an agreement with OftaRed

In the frame of the signed agreement between the Spanish Association of Aniridia and Oftared http://www.oftared.com/, an innovative proposal was launched: those students of Nursing, Optics and Medicine Schools in Valladolid University (Spain) may apply for an annual University cooperation, according to which, they can get 3 credits of free choice in their University Curriculum.

For the first time, the studies and activities focused on Aniridia will have the official recognition at University level. This is a pioneer initiative, because it is oriented to the  dissemination of the information about Aniridia, through the translation and summary of scientific research articles, diagnosis, rehabilitation and treatment related to it. Therefore, the purpose is to make the scientific information accessible to the society, especially to the members of the Spanish Association of Aniridia.

Thanks to this initiative, awareness, visibility and understanding about this rare  pathology can be increased. But, what is more relevant is that a rare disorder, like Aniridia gets into the University in the educative arena,  drawing attention and interest among future socio-health professionals, an achievement that nobody could imagine twenty years ago, when the Association was created.

For more information, please, see: http://aniridiayciencia.blogspot.com.es/

 

Clinical trial on KeraKlear Non-Penetrating Keratoprosthesis in Spain

A prospective, multicenter clinical trial designed to evaluate the safety and probable benefit of the keraklear non-penetrating keratoprosthesis in subjects with corneal opacity due to severe limbal stem cell deficiency associated with aniridia

Summary:

  1. Sponsor and address

KeraMed, Inc.

4122 East Chapman Avenue

2nd Floor, Suite 26

Orange, CA 92869Tel: 973-276-1414

Fax: 973-276-1882

 

  1. Study title

A PROSPECTIVE, MULTICENTER CLINICAL TRIAL DESIGNED TO EVALUATE THE SAFETY AND PROBABLE BENEFIT OF THE KERAKLEAR NON-PENETRATING KERATOPROSTHESIS IN SUBJECTS WITH CORNEAL OPACITY DUE TO SEVERE LIMBAL STEM CELL DEFICIENCY ASSOCIATED WITH ANIRIDIA

 

  1. Protocol nº

ANIRIDIA001 Version 01. Date: 28 March 2017

 

  1. Principal Investigator and address.

Dr. Jorge L. Alió

Vissum

Calle Cabañal, 1

03016 Alicante

Spain

Email: jlalio@vissum.com

Tel:  0034 965154062

Fax: 0034 965151501

 

  1. Centers where the study will take place

Vissum

Calle Cabañal, 1

03016 Alicante

Spain

 

  1. Evaluating IRB

CAEC (Comité Ético Autonómico de Estudios Clínicos de Medicamentos y Productos Sanitarios de la Comunitat Valenciana)

Dirección General de Farmacia y Productos Sanitarios

C/ Micer Mascó, 31

46010 Valencia

Spain

 

  1. Principal objective

To demonstrate the safety and performance of the KeraKlear Non-Penetrating Keratoprosthesis in patients with corneal blindness due to severe limbal stem cell deficiency (LSCD) associated with aniridia.

 

  1. Design.

This is a prospective, single center, single arm, open-label clinical trial, designed to demonstrate the safety and performance of the KeraKlear Non-Penetrating Keratoprosthesis. Approximately 20 subjects will be enrolled to account for subjects who sign the Informed Consent Document but fail to meet the eligibility criteria and are discontinued from the study as a screen failure. A maximum of 20 subjects (20 eyes) will be implanted with the KeraKlear device. Patients with corneal blindness due to severe limbal stem cell deficiency (LSCD) associated with aniridia will be screened for study participation.  Screening procedures will include measurement of uncorrected visual acuity, best-corrected visual acuity, manifest refraction, Schirmer Testing, intraocular pressure measurement, corneal pachymetry, dilated fundus examination including optic nerve assessment, and slit lamp biomicroscopy.

Eligible subjects who have provided written informed consent will then be enrolled and scheduled for implantation of the KeraKlear Implant.  A copy of the Informed Consent Document is provided in Appendix Two.

Postoperatively, subjects will be examined at (with window size in parentheses):

  • 1 Day (+2 days)
  • 1 Week (7±2 days)
  • 1 Month (30±5 days)
  • 2 Months (60±7 days)
  • 3 Months (90±7 days)
  • 4 Months (120±10 days)
  • 6 Months (180±10 days)
  • 9 Months (270±20 days)
  • 12 Months (360±20 days)

 

Each study examination will include measurement of uncorrected visual acuity, best-corrected visual acuity, manifest refraction, intraocular pressure measurement, Anterior Segment Optical Coherence Tomography (OCT), dilated fundus examination including optic nerve assessment, and slit lamp biomicroscopy.  Adverse events will also be recorded at each visit, as well as any unscheduled visits that occur during the study.

  1. Disease under investigation

Patients with corneal blindness due to severe limbal stem cell deficiency (LSCD) associated with aniridia.

 

  1. Information regarding medication under study

No pharmaceutical product is under evaluation in this study.

The medical device in evaluation in this study is the KeraKlear® Non-Penetrating Keratoprosthesis. The application of this medical device in this study is covered by the CE mark 0459 as indicated in the enclosed certificate.

 

  1. Study population and total number of subjects

The study population will consist of 20 adult subjects from 22 years to 80 years of age with corneal blindness (Best Corrected Snellen visual acuity equal to or worse than 20/200) where cornea transplantation is necessary but is expected to be unsuccessful due to severe limbal stem cell deficiency (LSCD) associated with aniridia. Only one eye is to be enrolled.  If both eyes qualify, the eye with worse Best Corrected Distance Visual Acuity is to be enrolled.

Inclusion Criteria

  1. Male or female from 22 years to 80 years of age at screening study visit.
  2. Corneal blindness where cornea transplantation is necessary but is expected to be unsuccessful due to severe limbal stem cell deficiency (LSCD) associated with aniridia.
  3. Best Corrected Distance Visual Acuity (Snellen) which is equal or worse than
    20/200 in the study eye (but at least light perception with projection)
  4. Estimated visual potential of the study eye is greater than or equal to at least two lines visual improvement of BCDVA of current vision in the study eye.
  5. Patient and/or caregiver willing and able to insert and remove bandage contact lens.
  6. Negative serum pregnancy test for females of child bearing potential.
  7. Willing and able to give consent and sign the consent form.
  8. Willing and able to comply with all protocol defined procedures including use of post-operative medication and return to the office for all study visits.

EXCLUSION CRITERIA

  1. Visual Acuity of No Light Perception (NLP) in the study eye
  2. The patient is monocular or the non-study eye has Best Corrected Distance Visual Acuity (Snellen) of worse than 20/160 due to an ocular condition other than severe aniridic limbal stem cell deficiency or due to multiple (two or more) failed cornea transplantation surgeries.
  3. Suitable for standard PK with donor tissue in the study eye.
  4. History of severe dry eye syndrome or a Schirmer test with results of less than 3mm after 5 minutes of testing with the use of topical anesthetic in either eye
  5. Active or history of an auto-immune disease (e.g. Rheumatoid Arthritis, Ocular Cicatricial Pemphigoid, Lupus, Steven’s Johnson Syndrome, atopic keratoconjunctivitis, etc.).
  6. On medications that may affect wound healing, such as antimetabolites or other chemotherapeutic agents.
  7. History of posterior segment eye disease in either eye (including macular degeneration, optic neuropathy, posterior uveitis) which is expected to limit the visual improvement to less than two lines of vision
  8. History of retinal surgery in the fellow eye (including retinal detachment repair, intravitreal injection, etc.)
  9. History of retinal surgery in the study eye (including retinal detachment repair, intravitreal injection, etc.) unless the vision is at least light perception with projection in four field quadrants and the macula is attached (if there is no view of the retina, an ultrasound must show the macula is attached).
  10. Current use of beta blocker eye drops (e.g. timolol, levobunolol, etc.)
  11. Vertical cup-to-disc (C:D) ratio greater than or equal to 0.8 in either eye (if able to visible through corneal opacity). If not visible, patient is not to be excluded.
  12. Limited visual potential (patient does not have the ability to improve a minimum of two lines of vision of BCDVA by history).
  13. History of amblyopia in the study eye limiting visual potential.
  14. If the patient has had a corneal transplant, corneal transplantation surgery was performed less than 2 years ago.
  15. Anticipated need for surgery on the study eye during the course of the study (including cataract surgery).
  16. Aphakia in the study eye.
  17. Active ocular infection in either eye.
  18. Hypotony in the study eye (IOP < 6mmHg)
  19. History of herpetic ocular infection in the study eye.
  20. Corneal thickness less than 400 microns in any region of the pachymetry map
  21. Inability to protect the operated eye from trauma.
  22. Females who are pregnant, lactating, or unwilling to use adequate birth control for the duration of the study.
  23. Patient is currently taking Sumatriptan (Imitrex) and unable to discontinue during the course of the study.
  24. Participation in an investigational study, device or drug, within the last 30 days.
  25. Known allergy to any of the medications used during study procedures, surgical procedure, or post-operative care.
  26. Any known allergy to the materials or cleaning solutions of the implant (acrylic) or bandage contact lens.
  27. Active smoking habit (enrolled subjects should be cautioned regarding exposure to smoke from environmental or occupational sources)
  28. There is reason to believe the patient and/or caregiver would not use the prescribed post-operative regimen (medication and contact lens use) as directed. Patient has a history of medication non-compliance or dementia.
  29. Presence of any condition, abnormality, or situation at screening that in the opinion of the investigator precludes the patient’s ability to comply with the           study requirements, including completion of the study or the quality of the     data. Reason for exclusion should be documented on CRF.
  30. History of uncontrolled glaucoma in either eye (IOP has been measured above 25 mmHg at any time in the last 6 months)

 

  1. Funding source

This study will be fully supported by KeraMed, Inc.

 

  1. Work plan

As soon as this study is approved by all the required authorities the working plan will be as follow:

  • Inclusion period of patients: Month 0 – 6
  • Implantation of the First patient: Month 1
  • Implantation of the last patient: Month 7
  • Start of clinical follow up of the implanted patients: Month 1
  • End of clinical follow up of the implanted patients: Month 19
  • Report of the clinical study: Month 20

 

  1. General objectives and specifics. Fundamentals

The objectives are the evaluation of the performance and safety of the KeraMed Implant as follows:

 

PERFORMANCE OUTCOME

  • Improvement in BCDVA compared to baseline

 

SAFETY OUTCOMES

  • Ocular Adverse Events
  • Slit Lamp and Fundus Findings
  • Reduction in BCDVA from baseline
  • IOP

 

Aniridie België – symposium 2018

Tijdstip: 24 februari 2018 van 9.30 u tot 13.20 u

Locatie:  UZ Gent – bibliotheek Jules François – dienst oogziekten – UZ Gent
Voor een routebeschrijving naar het UZ Gent:
http://www.uzgent.be/nl/overuz/Bereikbaarheid/naar-de-campus/Paginas/default.aspx

Programma:

9h30 – 9h40: Introductie (Aniridie België) [10 min]

9h40 – 10h40 : Prof. Dr. Leroy (UZ Gent Diensthoofd Oogheelkunde – oftalmogenetica)
Genetische achtergrond/schetsing Aniridie + interessante research, potentiële (gen-) therapieën inzake Aniridie en PAX6 (huidig en toekomstig
[60 min inbegrepen Vragen en antwoorden]

10h40- 10h55 : Pauze [15 min]

10h55 – 11h55h : Dr Behaegel (Research fellow Oogheelkunde UZ Brussel/UZA)
Resultaten van de stamcelstudie
[60 min inbegrepen Vragen en antwoorden]

11h55 – 12h10 : Pauze [15 min]

12h10 – 13h10 : Dr Delbeke (UZ Gent Oogheelkunde – kinderoogarts)
en Dr. Walraedt- (UZ Gent Oogheelkunde – kinderoogarts en Low Vision)

De klinische follow-up van kinderen met aniridie (bevindingen oculair, complicaties, behandelingen, brillen, fotofobie)
[60 min inbegrepen Vragen en antwoorden]

13h10 : Slotwoord [10 min]

Mogen wij u vragen ons per e-mail op info@aniridie.be  uw aanwezigheid te laten weten

en met hoeveel personen. Vanwege logistieke redenen is het handig om een zicht te hebben op het aantal deelnemers.

Met vriendelijke groeten,
Aniridie België
www.aniridie.be

#iOmap: autonomy is nothing without control

Group picture of Aniridia Italy youth 2017

9th National Meeting of the Italian Aniridia Association
Pisa (Italy), 26th-28th of May 2017

After the meeting in Milan in 2016, where we listened to many persons and understood their different needs, Aniridia Italiana has decided to organise a meeting for adolescents and young adults to deepen our knowledge about senses, personal autonomy and independent living.

Our objective was to provide more information about the possibility to reach a real autonomy in its manifold aspects, from orientation and mobility skills to daily life at home to interpersonal relationships, by using the ability to integrate all the information coming from the different senses and to interpret it through the use of logics.

We were supported in this task by Paola Cataneo, the president of ANIOMAP, the Italian Association for Orientation, Mobility and Personal Autonomy, and by Laura Corsi, one of her instructors colleagues.

But what we really relied on for our meeting was the quickest, most powerful and innovative software that was implanted in the mists of time on the most ancient computing machine: the human brain. This software is “intelligence”, described as the ability to perceive or deduce information, and to retain it as knowledge to be applied towards adaptive behaviors within an environment or context. And this is what the “I” on #iOmap stands for (the other initials are: orientation, mobility, autonomy, personal – but this hashtag can also be read as the ability to “map” our “self”, “io” in Italian).

The meeting on Saturday morning was focused on daily life at home, with practical examples of housework and organization of the interior of the buildings we live in, with the aim to demonstrate that performing some tasks with a visual impairment is not as impossible as it could seem.

After lunch, the participants were split in teams to play with their ability to recognize noises, songs, voices. The capability to recognize a noise is essential to develop a quick response mechanism, in terms of action-reaction, in many daily life situations.

Two women with sun glasses among vegetables in a storeOn Sunday morning, the participants were involved in a very challenging task: to go alone into a supermarket with a list of four different categories of items (fresh vegetables, fresh foods, packaged foods, personal hygiene products), find them and pay them at the cash desk. For safety reasons, each participant was followed by a sighted person that had to stay silent, without giving any suggestion.

Youth bending down to see contents on store shelvesIt was very interesting to note that all participants used integrated sensorial perception and logics, but no one used the other tool that had been suggested, that is, asking the staff or the other customers for help. Which probably means that we have to keep working on the emotional side of our interpersonal relationships, overcoming the idea that requesting help is a weakness. It is not. And this issue will shape our next meeting.

Aniridia Spain Research Awards

The Spanish Aniridia Association provides annual Awards to Aniridia Research in the frame of the Congress of the Spanish Ophthalmology Society. Here is the Record of Research Awards:

2005 AWARD FOR THE BEST POSTER ON CORNEA TREATMENT IN CONGENITAL ANIRIDIA

“Therapeutic options in Congenital Aniridia” Dr. Fabiano Brandao, Barraquer Opthtahlmology Centre, was awarded by the Spanish Aniridia Association, as the best poster in the frame of the  81º Congress of the Spanish Ophthalmology Society (SEO) in Zaragoza. The poster “Therapeutic option in Congenital Aniridia” was about IOL Morcher adaptation in surgical intervention in aniridia patients.

2006 AWARD FOR THE BEST  RESEARCH STUDY ON CORNEA TREATMENT IN ANIRIDIA PATIENTS

 “Ocular Surface management in Aniridia patients”.

Dr. José Santiago López and Dr. Luis Rivas and Dr. Isabel García were awarded, as the best research study,  for their study “Ocular Surface management in aniridia patients”, in the frame of the 82º Congress of the Spanish Ophthalmology Society (SEO) in La Coruña.

2007 AWARD FOR THE BEST POSTER ON GLAUCOMA IN ANIRIDIA PATIENTS

The poster “Glaucoma in Aniridia patients” by Dr. Fabiano Brandao and Dr. García Barberán was awarded as the best oster  in the frame of 83º Congress of the Spanish Ophthalmology Society SEO. Gran Canaria.

2008 AWARD FOR THE BEST RESEACH STUDY ON ANIRIDIA.

In the frame of the 84º Congress of the Spanish Ophthalmology Society SEO 2008 the Spanish Guidelines for the Management of Congenital Aniridia was offially presented

2009 AWARD FOR THE BEST POSTER ON ANIRIDIA RESEACH

”The Genetic Study in Families Affected by Aniridia” by Dr. Cristina Valverde Montero and the Genetic Unit team of Jiménez Díaz Foundation, was awarded as the best poster on aniridia research.

2010 AWARD FOR THE BEST  FREE COMMUNICATION WITH A SPECIAL INTEREST  FOR THE MANAGEMENT OF ANIRIDIA AND ASSOCIATED CONDITIONS.

The communication of the team, chaired by Prof. Dr. Francisco J. Muñoz Negrete and presented by Dr. HR Won Kim, Dr. E Jarrín, Dr. L. Rivas and Dr. G Rebolleda, all of them at the Ophtthalmology Dep. at  Ramón y Cajal Hospital in Madrid, was awarded in the frame of the  86º Congress of the Spanish Ophthalmology Society

2011 AWARD FOR THE BEST  POSTER ON ANIRIDIA RESEARCH

WAGR Syndrome. The poster on WAGR Syndrome by the team: Dr. Adriana Ivanesku, Dr. Carla Barreales, Dr.Marta Bové and Dr. María Antonia Ardanaz (Hospital Virgen del Camino Hospital in Pamplona) was awarded as the best poster in the frame of the 87º Congress of the Spanish Ophthalmology Society.

2012 AWARD FOR THE BEST POSTER ON ANIRIDIA AND ASSOCIATED CONDITIONS RESEARCH.

The researchers Prof. J. L. Alió, Dr. P. Casas-Llera, Dr. J.M. Ruiz-Moreno and  Dr. A. Siverio were awarded by their poster on aniridia reseach in the frame of the 89º Congress of the Spanish Ophthalmology Society.

2013 AWARD TO THE BEST RESEARCH STUDY  ON CLINICAL AND TRANSLATIONAL RESEARCH ABOUT DIFFERENT PROBLEMS FACED BY ANIRIDIA AND ASSOCIATED CONDITIONS..

The researchers Prof. Miguel A. Teus and Dr. Javier Paz were awarded as the best research study in the frame of the 89º Congress of the Spanish Ophthalmology Society.

2015 AWARD FOR THE BEST RESEARCH STUDY.

“Use of CGH arrays for delections study in 11p13 chromosomic region  in Aniridia patients and related conditions” by Dr. Marta Corton, together with Dr. Fiona Blanco-Kelly and other reearchers from Research Institute-Jiménez Díaz Foundación in  Madrid, were awarded in the frame of  the 91º Congress of the Spanish Ophthalmology Society, as the best poster/communication on Aniridia Research.

2016 AWARD FOR THE BEST RESEARCH STUDY.

“HISTOPATHOLOGY FINDINGS OF CORNEAL BUTTONS IN CONGENITAL ANIRIDIA PATIENTS”, Montserrat Bausili, Batrraquer University Institute, Autonomous Universiiy Barcelona, Barraquer Ophthalmology Centre.

 

Aniridia Spain signs an agreement with OftaRed

 

In the frame of the signed agreement between the Spanish Association of Aniridia and OftaRed http://www.oftared.com/, an innovative proposal was launched: those students of Nursing, Optics and Medicine Schools in Valladolid University (Spain) may apply for an annual University cooperation, according to which, they can get 3 credits of free choice in their University Curriculum, for the people with not access to a University, they could go online to find the best pharmacy technician school near me, so they can specialize in this career as well.

For the first time, the studies and activities focused on Aniridia will have the official recognition at University level. This is a pioneer initiative because is oriented to the  dissemination of the information about Aniridia, through the translation and summary of scientific research articles, diagnosis, rehabilitation and ocd treatment related to it. Therefore, the purpose is to make the scientific articles accessible to the society, especially for all the members of the Spanish Association of Aniridia. Call demenagement adt when you want to travel and they can help you move.

Thanks to this activity, awareness, visibility and understanding about this rare  pathology can be increased. But, what is more relevant is that a rare disorder, like Aniridia gets into the University in the educative arena,  drawing attention and interest among future socio-health professionals, an achievement that nobody could imagine twenty years ago, when the Association was created. With recent studies, they’ve seen that getting a goodnight sleep, every night, can improve a person’s life span, so check out these mattress sizes for your home.

For more information, please, see: http://aniridiayciencia.blogspot.com.es/

 

 

8th national meeting of the Italian Aniridia association

“Accepting we learn”

Meeting on independent living

 

8th national meeting of the Italian Aniridia association

San Donato Milanese, Milan – Italy

18th – 20th November 2016

REPORT

Outside the cold, misty weather typical of a late-November weekend in Milan provided the setting for a wonderful gathering. Indoors in the hotel lounge bar the welcome drink created a warm, hearty atmosphere where a group of friends were happy to be meeting up again. We exchanged the latest news whilst sipping our drinks and enjoying some excellent Italian food. The mood was one of excitement as we prepared ourselves for our meetings, or rather, the new adventure that had brought us here from our homes located in different regions of Italy.

The meeting was organized by Matteo and Veronica, both young adults with Aniridia. The focus of the meetings was that of acceptance and of independent living for people with a visual impairment. Underlying this objective is a philosophy based in the intelligent acceptance of the life and its limits and also the learning strategies that can be developed to help overcome these limits.

More specifically, the aim was to support people at a moment in their life when their sight is worsening. A point where all previously known reference points are lost and there is no longer the option of functioning as one did before. The reality is that this stage requires strength, courage and awareness yet also new strategies and most importantly strong social skills that allow one not only to receive but to also offer mutual help.

The target audience was primarily the adolescents and young adults of our Association. However, it also provided a great platform for parents of young children to ask questions, learn strategies for their children and most importantly to hear other peoples stories.

The novelty of this meeting was the methodology we adopted: we forgot about the lectures by experts where the audience is passive and can just take notes, and instead we got involved. We all stepped onto the stage, moved out of our comfort zone, challenged our beliefs, questioned, shared, played, experimented and laughed together. We let our defenses down and with a lot of self-irony had great fun.

To facilitate this process of self-empowerment, Matteo used the metaphor of the X-Men: the idea that, as the Marvel’s superheroes, people with Aniridia too are mutants. The connection being that with awareness and acceptance each individual can choose to find and use their superhuman abilities.

On Saturday morning we explored with Veronica all the ‘voice’ tools that can facilitate daily life: from interactive TV’s to vocal thermometers; from talking kitchen accessories and bathroom scales to vocal calculators; from digital pens that can read labels on jars to colour recognition pens for clothing.

Matteo provoked our thinking by taking us back to our childhood and video games. He helped us recall the skills we built up in finding combination moves (combos) for many of our video games. His explanation becoming clearer as Veronica walked us through the reality of sight loss and how step by step new combos had to be learnt. The reality being a knowledge of tools that initially rely on sight, such as magnification, to a better understanding of tools that can be used with total vision loss. Examples were given such as memorizing your computer keyboard, learning a series of key combinations, commands, sequences, tricks etc. Allowing oneself to navigate with ease, often faster than sighted peers. Making the best use of technology allows for more independence, which in turn leads to higher self esteem and therefore a better quality of life. The list of useful keyboard combinations will be available on our website.

We discussed the importance of mobiles. “Mobile first”: many international studies state that in the future smartphones will become the main technological devices for work and daily life. Advanced screen-reading technologies, such as Voice Over (integrated on Apple devices) or Talk Back (on Android), together with artificial intelligence software, like Siri on iPhones. A simple tap can book a flight, navigate a street and so on.

Lunch too brought us together as we experienced the difficulties of a buffet.

This experience helped push people out of their comfort zones highlighting how often the orientation skills are tested or senses used. Most importantly it highlighted the importance of asking for help and being able to approach people in a way that made the information they gave helpful. Too often embarrassment or fear stop us from asking for help. The buffet provided an opportunity to surpass this hurdle and to face and overcome this barrier, discovering (as quite often happens), that the barrier had been created in one’s mind. On the other hand sighted people were also given the chance to learn how to give “smart” and detailed indications, avoiding unnecessary information, and were also able to confront their own unease and fear of not being able to help. After all the common aim was not just that of learning but also about sharing an enjoyable lunch.

Saturday afternoon brought us to the core of our meeting: self empowerment through the strengthening of our senses and our logical reasoning.

We were offered concrete examples of how we could combine logic with our senses (hearing, smell, touch, taste) to address a lots of daily situations: where to find vegetables in a supermarket; where to find the cashier; the toilet; the way out; how to cross the street and so on.

The floor was opened up for participants to share their personal experience and the techniques they’ve developed “in the field” to manage situations that may seem impossible or very difficult for a visually impaired person: cooking; tiding up an apartment; shaving or making up; using the public transport; studying, working and so on. All this is achieved through trial-and-error situations and a continuous and determined striving to overcome obstacles.

We even heard Silvia’s story. That of a blind mother with a visually impaired daughter. We heard how she fed, changed and followed her daughter as she crawled, walked and now attends school. We were all moved with admiration as she spoke of sewing a bell to her daughter’s clothes to be able to follow her as she crawled around the house.

On Sunday morning we talked about independent living through the use of a white cane/stick and a guide dog. We had the opportunity to learn some techniques of using a white cane, combined with the LOGES (an Italian acronym for a system of tactile paving for the visually impaired, which literally means a line of orientation, guidance and safety), used in railway stations, airports and in public offices.

In spite of all the difficulties (paths leading to closed offices, signs inappropriately put on the path, and so on), the white cane cannot only be an aid, but a tool of self defense against obstacles and occasionally idiots. An extension of one’s senses that through half-moon movements on the floor can create the infinite magic of independent mobility.

The arrival of Ulma and Nelson, two wonderful guide dogs, introduced us to the experience of creating independent mobility with the help of a non-human living being. We were also introduced to a unique and intimate relationship. Samuele Frasson, a representative of the national commission for guide dogs, helped us understand the procedures for getting a guide dog, the requirements, the regulations about accessing means of transport, public offices, restaurants and other public places and workplaces. Then, through hands on experiential work, we all learnt some techniques for dealing with a guide dog.

The moment to say goodbye arrived all too soon as we were immersed in all this new learning and sharing. Sad but manageable as we already planned a further step on our journey of acceptance, learning and improving… knowing that the ‘programming’ had already begun!

 

Barbara, Corrado and Matteo

Milan, November 2016

 

7th National Meeting of the Italian Aniridia association: Ten Years of Confrontation

The setting was Abano Terme (Padua) over the weekend of the 20-22 of November 2015. The atmosphere was one of continuous sharing, community and hope for the future. Families children and adults discussed, played and learnt together over a memorable eventful weekend.
The conference started on Saturday with a round table entitled ‘Sport and Courage – The balance in life’. A session of two and a half hours, led by the Vice president of the Aniridia Italy Association, Matteo Castelnuovo, which saw participants of competitive sports sharing their stories of success, failure, collaboration and challenges that allowed them to overcome their fears to succeed at high levels.

Participants included: Veronica Tartaglia (Fencing), Andrea Bellè (Personal trainer), Christina Albicini and Michael Pellegrino (Swimming), Marco Longo (Extreme sport – Open water swimming), Sara Pecchia and Thomas Abbruzzo (Martial arts) and Giammaria Dal Maistro (Paralympic Champion 2006 of Alpine ski).
The afternoon workshop was entitled ‘One Tap to Go – A journey in one’s hand’. Veronica Tartaglia and Matteo Castelnuovo explained in 45 minutes the way a smartphone can facilitate travel at home or abroad.
The most awaited round table entitled ‘Big Mama – Strength of a Woman, Courage of a Mother” saw a number of women sharing their stories of motherhood and disability. These shared stories had a common theme of feelings surrounding motherhood and disability, choices and most importantly that of advocacy. The presenters were: Laura Spitaleri (a mother with Aniridia with two children over thirty, one of whom has Aniridia), Silvia Secchi (a blind mother with an eight year old daughter with Aniridia), Sara Pecchia (a young woman with Aniridia who is hoping to have a child) and Daniela Teofili (sighted mother with a pre-adolescent daughter with Aniridia). The discussion was led by Matteo Castelnuovo.
A further workshop ‘Tech Day by day – How talking to your phone does not necessarily mean you are crazy’ was led by Giammaria Dal Maistro. Technological advice, new frontiers and a look at the world of technology which is unfolding before us.

Participants playing and learning at the same time.
Participants playing and learning at the same time.

The final workshop ‘Government and laws – A law is not just words’ saw Christina Giuffredi and Laura Spitaleri (experts in Rights) led by Matteo Castelnuovo discussing rights to access care and medications and equal rights to work.
The evening went on with discussions, stories and shared experiences by young and old. The next morning saw the weekend being brought to an end with Aniridia Italy’s meeting entitled ‘10 years of Confrontation’. The President of the Association Corrado Teofili, the European delegate Barbara Poli, the Treasurer Anna Nardini and the Vice president Matteo Castelnuovo shared information with the guests on the achievements of the association over the last ten years, on what is being done and what can be done for the association that is in a continuous process of growth not only in numbers but also in projects and objectives to achieve.

Overall a successful 48 hours, because ten years are only the beginning of a long and exciting adventure.

A big thank you to all the participants and speakers that were the heart and engine of this operation.

One vision! Summer camp 2015 – Video and Report

 

 

One vision!
Youth in Europe with Aniridia

Summer camp in Bussolengo (Verona, Italy), 3rd to 15th August 2015

Report

Participants

Germany: 7 people
Italy: 15 persons
Norway: 17 people
Spain: 10 people
United Kingdom: 9 people

Participants’ organisation during the camp

Each of the four adults was appointed a specific task: Trude was the overall supervisor and in charge of the programme’s implementation; Barbara was in charge of logistics (transportation, hotel, food, activities’ booking and so on); Linda, as a nurse, was the reference person for health needs; Tim was in charge of Youthpass activities.

The young participants were divided in “colour groups” of 8-9 persons with a young leader; the groups were balanced in terms of gender, nationality and visual capacity, in order to ensure the maximum possible mixing while keeping the safety of participants and their need for a guide; the insufficient level of English of some participants required to have in same group someone from the same country to translate.

The colour groups were the main feature of the camp and the real “working units” to perform the project’s activities. Some activities required instead a division by countries or by skills.

Programme

August 1st – Saturday

Arrival of the organizing group to make agreements on accommodation and meals, to start programming and to check the locations for activities at the hotel (meeting and activities rooms, swimming pool, playing fields, outdoor spaces, …)

August 2nd – Sunday

Same as above

August 3rd – Monday

Arrivals – Welcome

August 4th – Tuesday

Get to know each other and become familiar with the hotel’s spaces and facilities

Division by colour groups and appointment to the first tasks

Youthpass in groups: a game on the grass where groups were required to find numbers scattered all around and to answer questions; each colour group could identify their members either by the colour or by the sound of the cry of an animal

In the evening the Opening Show

August 5th – Wednesday

My leisure

In the morning: Organizing the activities’ days. The participants were divided according to their skills. Groups were made for:

  • Swimming
  • Karate/Judo
  • Painting/ aquarelles
  • Goal ball/football
  • Basics in 5 languages
  • Music and dancing

Each group had to prepare a lesson during which each participant could experience the activity and “learn by doing”.

In the afternoon: Preparing for the trip to Venice. The participants were given information about the city and on the itineraries the colour groups had to follow, together with specific instructions on the equipment and behaviour required.

Evening: dancing/music

August 6th – Thursday

Venice. Each colour group had to follow a different itinerary during the morning, with the goal of reaching Saint Mark’s square. This was intended with a sort of “orienteering” walk. In the afternoon, a walk and a gondola tour. Then dinner at the Old Wild West restaurant (tex-mex cuisine)

August 7th – Friday

In the morning: preparing the European day. Participants were divided by countries in order to prepare a presentation on their homeland and an explanation of how it is to live with aniridia in their respective countries.

In the afternoon: walking and shopping in Verona.

In the evening: the opera Il Barbiere di Siviglia, at the Arena di Verona.

August 8th – Saturday

European day. Five countries present their homeland. Each country group made a presentation including games and acting or dancing

Evening: dancing/music

August 9th – Sunday

Youth in Europa with aniridia – One Vision

European corporations: The Vice-President of Aniridia Europe presented the work the federation has done in the past years, what it is doing now and which are the perspectives for the future. She insisted that a key point is the involvement of the young, in order to bring in new ideas and to ensure the future of our network. The two take home messages were: 1) do not ask what AE can do for you, ask what you can do for AE, because everyone can play a role; 2) be aware that while building a network you will have to deal with different cultures, ideas, healthcare and law systems. If you want to build a collaborative network, do not get stuck on prejudices about people from the other countries, open your mind and make the effort of understanding before judging. Then she answered the questions and she invited the young to submit suggestions for the Board of Aniridia Europe

Participants were then divided by colour groups to define their ideas and suggestions on: How´s the future – how will we like it to be? How to create a network of young people having aniridia in Europe. Each group presented their reflections and suggestions.

August 10th – Monday

Activities Day: Learning from each other and Learning by doing

The participants, organized in four groups that shifted from an activity to the next during the day, experienced:

  • Swimming
  • Karate/Judo
  • Painting/ aquarelles
  • Goal ball/football
  • Basics in 5 languages

In the evening, Spanish dances and music playing.

August 11th – Tuesday

Rafting on the Adige river. Participants spent all day on the river, paddling under the supervision of expert guides. They stopped to picnic and to take a bath.

August 12th — Wednesday

Colour groups worked on evaluation the Activities Day (how were the activities prepared, what they had learned, what they liked) and then presented it to all.

Then each group was given the task of summarizing two or more of the various aspects and activities of the camp, possibly in a lively and amusing way, for the closing party.

August 13th – Thursday

Gardaland, the amusement park

August 14th – Friday

Evaluation:

  • Youthpass
  • Reflections on the next camp. Participants worked in colour groups to reflect on their experience and to prepare suggestions for the next camp, focusing not only on when and where, but also on organizational issues such as number of participants, number of countries involved, programme, activities.
  • Preparing the evening show

Closing party with a summary of the camp, music and dancing

August 15th – Saturday

Departures

Achievements

The two topics of the project were successfully implemented.

Meaningful leisure included learning by doing and from each other in activities as swimming, karate, judo, painting, football, goalball, languages, dancing and music playing. The participants experienced on one hand the task of working in group to prepare a lesson, with the goal to transmit their skills and their enthusiasm to the others, and on the other hand the possibility to try something they’d never tried before. And all this having real fun!!!

Furthermore, they visited two of the most beautiful cities in Italy, Verona and Venezia. In the former, they had the opportunity to attend the opera Il Barbiere di Siviglia at the Arena di Verona (the ancient Roman theatre), a quite rare experience for a young person. In the latter, they followed different itineraries as in a “treasure hunt” looking for monuments and interesting spots, and had a gondola tour kindly offered by the local association of gondoliers.

Rafting on the Adige river was a beautiful yet demanding experience, paddling all the day on the river, in an atmosphere of amusement and sound competition.

European corporations was the occasion for a thorough and in-depth reflections on the challenges that every person affected by a rare disease comporting a disability has to face in his/her life. The message of mutual help, collaboration, reciprocal empowerment was clearly conveyed and discussed, placing the possible actions in a supranational and specifically European perspective. In this, the experience of Aniridia Europe, the federation of the aniridia associations and representatives in Europe, that gather people in 20 countries, was presented as a significant story to show what can be achieved by a group of people determined to work together in spite of the national differences and focused on improving scientific knowledge of the disease, and a better treatment and care for all people in all countries.

The focus was therefore on inspiring the young to improve their skills and to educate themselves with the objectives of coping with their difficult challenges in a complex environment and of building a network of young people with aniridia in Europe as the main way to promote knowledge and improvement.
Moreover, the informal learning was widely performed during the free time and during meals, and quite quickly the participants began playing together overcoming the difficulties with visual impairment (in the swimming pool, at the bar tables, in the garden, in the football ground…), organizing shopping tours in the nearby town, talking in groups and exchanging experiences in the evenings and so on.

An overall evaluation of the camp shows that it was a very positive and instructive experience for all the participants. It is an important step to build a strong and long lasting connection among the young people with aniridia in Europe, a fundamental basis for the future of any possible action towards the objective of improving the quality of life and care for people affected by this rare disease.

See video filmed at camp: Try and try again – Low vision in sports.

Criticalities

Group composition: a key point proved to be the composition of each national group. Not all the groups were well balanced under the following aspects:

  • Not enough guides for the visually impaired.
  • Insufficient level of English of some participants, that constantly needed translation

Adult leaders: the tasks were clearly defined and appropriately shared among the four adults, but in some moments they were overwhelmed by all the issues they had to cope with. It must be said that some more adults were expected to be in the group, but eventually did not come.

 

Barbara Poli
Bussolengo (Verona, Italy) , September 2015