Day Walker

Image
Drawing of a child wearing a mask to protect from sunlight.

The genetic disorder Xeroderma Pigmentosum (XP) makes skin ultra-sensitive to UV light. Any exposure to the sun’s rays or artificial UV sources (e.g. some halogen and neon lights) can cause fatal skin cancer. People suffering from XP (30 thousand worldwide, most of them children) need special protection, covering all body parts. Several attempts were made to facilitate their daily lives. An improved layout of the currently used head mask and making it available for developing countries would be next important steps.

Events
THE Port Humanitarian Hackathon 2015
Attributes
Health

Project Team

Portait of a team member

Andy Butterworth

Andy works in the CERN Beams department where he is currently responsible for software and controls of the radio frequency acceleration systems of the accelerators. He holds a PhD in Applied Physics from the University of Birmingham.

Portait of a team member

Ashley C. Pilipiszyn

A Chicago-native, Ashley is a MA candidate in International Relations at IHEID at the University of Geneva. Her research domain is the intersection of global health, environmental security, energy diplomacy, & sustainable cities. She is a Spark Clean Energy Fellow with the U.S. Department of Energy & MIT. Previously, Ashley was at Harvard University studying biotechnology & public health while with the MGH Health Policy Institute. Her BA is from Indiana University in Human Biology & Psychology.

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Eric Siu

Eric Siu is a Hong Kong new media artist currently based in Tokyo. He has a broad interest in device art, interactive art, kinetics, installation, video and animation. He was a resident artist at the University of Tokyo. He received his MFA from UCLA in 2010. Eric’s works have been shown in Ars Electronica, MOCA Taipei, ZKM, FILE, Transmediale, EMAF, WRO, SIGGRAPH Asia, ISEA, Microwave, and so fort. His work “Touchy” received the first prize from the WRO 2013, and has been featured in various media such as Discovery Channel, Neural, Washington Post, Huffington Post, the Creators Project, etc.

Portait of a team member

Karola Dette

Doctoral student working on silicon sensor upgrade developments for the ATLAS experiment.

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Kathrin Garschall

Kathrin was born and raised in Austria and holds a Master’s degree in Molecular biology. In 2013 she moved to Switzerland and started a PhD at the University of Lausanne on the evolution of lifespan using fruit flies as a model organism. To complement working at laboratory bench and computer, she enjoys improvisation theatre and the combination of science and art in any form. Her latest project was the conceptualization and realisation of costumes for The Catalyst’s SNF funded science theatre play “Blue Butterfly”.

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Li Yu

Li Yu is a speculative designer and interdisciplinary researcher. She earned her Masters degree in Media Design at Haute école d’art et de design(HEAD) in 2013 in Geneva, holds two bachelors degrees in visual communication and interior design in France and China. She is passionate about the intersection between scientific research, technological innovation and design, especially biotech innovation and speculative/interaction design. She works with scientists and engineers, hackers and makers in a variety of international contexts Currently she is trying to build an new structure that will create design and innovation flow between Shenzhen and some European research institutions.

Portait of a team member

Matteo Macchini

Matteo Macchini holds a Master’s Degree in Robotic Engineering from the University of Pisa. He worked on his thesis in CERN, designing and developing a control system for an electro-mechanical system used for the beam profile evaluation. After his graduation, he remained at CERN and is now working as an engineering fellow, developing data analysis tools for measures on superconducting magnets. He also holds a Bachelor’s degree in Electronical Engineering and is passionate about everything that concerns science and technology, he’s always looking for new and exciting fields to apply his knowledge and learn new things.

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Paolo Francavilla

Paolo is a post-doctoral researcher at ATLAS for the Institute Lagrange de Paris and the Laboratoire de Physique Nucléaire et de Hautes Energies in France. He works on a Higgs boson search at ATLAS, and currently contributing to the development of the analysis strategies for the data coming from the new LHC collisions. He also works on the measurement of the missing transverse momentum in the ATLAS experiment.

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Robin Rajamäki

Robin is a technical student at CERN currently (supposed to be) doing his master’s thesis. He’s been studying signal processing and acoustics at Aalto University and TU Berlin and right now he’s looking for vacuum arcs in CLIC. His interests cover just about anything related to science or music.

Portait of a team member

Shirly Chiu

Shirley is a chemical engineer with six years in the minerals industry. She left that work to pursue something with more of a direct impact on society. She has been travelling in Europe since the end of May to meet social entrepreneurs and find out what is happening in the space, in particular the health industry. Shirley is particularly interested in problem solving and synergy from team brainstorming and mind mapping sessions. She likes to connect the dots and find out why things happen, how systems function. She would like to use this to make an impact in the social and health sectors.

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Wafa Chaabi

Wafa Chaabi is the President of the french association Enfants de la Lune (Children of the Moon). Xeroderma pigmentosum, which is commonly known as XP, is an inherited condition characterized by an extreme sensitivity to ultraviolet (UV) rays from sunlight. Children with XP have a greatly increased risk of developing skin cancer and without sun protection, they develop their first skin cancer by age 2 and die around age 10/15. Wafa’s daughter, Noha, aged 6 has also this desease and Wafa works every day to improve families’ lifes (82 cases in France).

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Yann Heurtaux

Yann learned everything he knows on communities thanks to MMORPGs. His avatar of choice is a Chaotic Good Dwarf Tank. Since 2014, Yann is co-building hackuarium.ch in Renens, VD near Lausanne, a leading citizen and open lab community and association championing DIY and collaboration values applied to Biology and other fields, a.k.a. “biohackerspace”. Another challenge for Yann: make sure UniverCity, the third-space hosting Hackuarium’s activities and many other projects (such as a coworking space and a fully equipped makerspace), makes a name for itself and have an impact. He is also serving as a Board Member for the opendata.ch and coworking.ch associations. Yann tweets and boards trains way too much.