A race against time

Thank you for your interest in the Green Sneaker Campaign

This is a very rare and incurable neurodegenerative childhood disease called NBIA. Research is on the verge of a possible breakthrough for the cure of this serious disease. With your support you not only give our son Nic back his life, but also the other 7,000 patients around the world.

supports the research and treatment of NBIA
(Neurodegeneration with Brain Iron Accumulation) at national and international level.

It's a race against time. Against an absolute standstill. Against NBIA.

  • Already collected / Foundation: CHF 101,631.02

Amount donated is updated once a week

The disease and its medication

NBIA is a group of hereditary diseases of the central nervous system.

The main characteristics are abnormal iron deposits in the basal ganglia in both halves of the brain. The basal ganglia are an accumulation of nuclear structures deep in the brain whose functions include the control of targeted movements and muscle tension as well as motor memory. NBIA belongs to the group of neurodegenerative diseases in which changes occur in nerve cells in the brain and impairment of their function, ultimately leading to cell death.

All NBIA diseases lead to progressive movement disorders.

The NBIA diseases predominantly begin in childhood or adolescence. Movement disorders are often accompanied by developmental delays, neuropsychiatric abnormalities and mental (cognitive) impairments. In addition, visual function, speech and swallowing may be impaired. Symptoms and disease progression are largely dependent on the respective genetically determined NBIA subtype and can also vary greatly from person to person.

Nic's chance is tangible

Nine-year-old Nic from Zurich and around 7,000 other PKAN patients worldwide now have a realistic chance to win their race against time. The research team from Oregon Health & Science University has succeeded in developing a drug for the treatment of PKAN. It has already been tested on human cells and shows promising results. In order to be able to start the trial series with affected patients, 2 million US dollars are needed. With the NBIA Stiftung Schweiz (NBIA Foundation Switzerland) you can make an important contribution.


We thank you for your donation by credit card or bank transfer to one of the following two accounts.
Choose the first account if you want to support the development of the NBIA medication.
Or choose the second account to help Nic and his family.

Arco Foundation
8400 Winterthur

IBAN CH72 0900 0000 1512 2078 3
Postal Account 15-122078-3
Purpose of payment: NBIA Stiftung Schweiz

The aim of the sub-foundation is the ideal and financial support of the research and treatment of NBIA (Neurodegeneration with Brain Iron Accumulation). The purpose is fulfilled in particular by the support of research projects for NBIA at home and abroad.

Donations to the NBIA Foundation Switzerland account can be deducted from Swiss taxes.

The Foundation’s current account balance: CHF 101,631.02 (last updated 16.06.2019)

Sonia Agnese Soglia-Lasalvia u/o
Roberto Soglia
Lindenstrasse 31b
8953 Dietikon

UBS Switzerland AG
CH-8098 Zürich
CH34 002 5925 9109 852 M1D

Ref: NBIA disease
Purpose of payment: Disease-related expenses

The account for Nic, in the name of the parents, was set up exclusively to support the expenses related to his illness. As soon as there is no need for this support, it will flow into the NBIA Foundation Switzerland for further research.

Unfortunately, donations to the account for Nic are not tax deductible.

Current balance of the account for Nic: CHF 59,502.19 (last updated 16.06.2019)