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Report CHM Workshop 02.09.2017 - 03.09.2017 in Friedberg / Hessen
The CHM Workshop 2017 took place on 2 and 3 September 2017 in Friedberg / Hessen. Michael Längsfeld, head of the working group CHM at PRO RETINA, organized the event where practical advice for everyday life was presented, alongside the most recent scientific findings, study participants spoke about their experience and state funding opportunities and legal options were demonstrated.
Some 30 CHM-affected and those interested in the topic arrived at the workshop. Many were filled with anticipation for the days ahead. First-time participants were unsure how other attendees would react or to what extent they would be able to cope with the event themselves. They all brought with them the hope to hear about new study results which would improve their life. However, there was a certain degree of uncertainty – and probably despair – due to each participant’s personal situation.
The city hall with bright and barrier-free premises has been booked for the venue and was located just a short distance from the hotel. A sense of familiarity quickly settled. The small size of the group and the casual and informal atmosphere ensured that everyone got to meet everyone else and that a family-like vibe settled upon the participants.
On the first day, Dario Madani of Vistac GmbH presented OrCamProducts My Eye and My Reader. These devices should ensure or facilitate a better readability and recognition of people and products. During the introduction, the speaker, who had lost his eyesight, mentioned that he is “not the type to rely on head-shaking or nodding as feedback”. He presented the products in a rather entertaining way. OrCam MyEye can be purchased at 4000 Euro, which certainly is not a bargain, but the device has been included in the catalog of therapeutic appliances of the statutory health insurance at the end of November 2017.
After the presentation of the OrCam helpers, professor Knut Stieger from the University of Giessen provided a scientific insight. He presented and classified current study results. As a result, CHM progression can be stopped with genetic therapy, which currently is being tested in Tuebingen. What a relief! However, it cannot be expected that an expansion of the visual field can be reached within the next 5-8 years. The revolutionary Crispr/Cas method can only stop the disease in the future. Disillusionment settled among those who had hoped for more.
The first day of the workshop ended with the presentation of the i-phone and its possibilities to support the visually impaired and blind in their daily life. Dario Mandani was presenting again. He showed how to operate the i-phone with gestures, how to give voice commands to Siri, write messages, create calendar entries, do online banking and navigate. After a program filled with manifold information, the evening ended with a communal dinner in a traditional Greek restaurant.
The second day of the workshop started with the participants of the Tuebingen study THOR CHM reporting about the process and success of gene therapy. Convalescence after surgery was lengthy, but the operated patients would indeed participate again. Furthermore, participants of the Bonn observational study shared their experience on e.g. a currently unclear timeline.
The second speaker was Dr. Michael Richter of the legal counseling corporation RbM Marburg (Rights of People with Disabilities), who also lost his sight. He talked about decreased earning capacities and drawback compensations for CHM-affected. In a very clear and comprehensible way, he addressed questions regarding prerequisites and the application process as well as one’s options if the request is denied.
The workshop closed with the planning of the patient symposium CHM 2018, under the leadership of the passionately committed organizer. CHM 2018 is the future. Hopes of healing that were more wishful thinking than expectations have been left behind. First-time participants experienced what it felt like to be part of a bigger group, where one’s own position and impairment is not unique. They have also experienced a feeling of intensity and support. Participants know that the process of the disease can be stopped, providing the option to a certain life planning and decreasing existential fear. The presented devices for everyday life and legal responses provided security and concepts of optimization. The way the speakers handled their own blindness was impressive. The nightmare of losing one’s sight seemed like a toothless tiger – manageable.
Zuletzt geändert am 05.05.2018 15:17