Policy plan

1. Introduction

The GBS Foundation, established in Rotterdam, Chamber of Commerce number 67386539 (the “Foundation”) is an initiative of the first board members (see below), who established the Foundation on November 29, 2016. With the establishment of this Foundation, a platform was created to financially support scientific research into the origin, treatment and consequences of the Guillain-Barré syndrome (“GBS”). The legal form of the Foundation has the advantage that optimum legal certainty, sound and transparent management and a non-profit character can be guaranteed.

The Foundation is not-for-profit.

2. Objective of the Foundation

The purpose of the Foundation is to raise funds in order to use them for scientific research into the cause, treatment and consequences of GBS and related forms of neuroinflammation. GBS is characterized by severe paralysis and sensory disturbances that develop over the course of a few days to weeks. About a quarter of patients become completely paralyzed and require mechanical ventilation and some die from GBS. The condition is caused by an inflammation of the nerves that is usually the result of an abnormal immune response to a previous viral or bacterial infection. Since the 1990s, there has been a treatment with high doses of human antibodies (immunoglobulins) that speed up recovery. Over weeks, months or years, the patient’s condition may improve, but recovery is often incomplete. Despite the treatment, the majority of patients suffer from residual symptoms that can consist of paralysis, sensory disorders, pain and severe fatigue. More understanding of the cause and consequences of GBS and more effective treatment is needed to give future patients a better perspective.

3. Activities of the Foundation

Since its establishment, the Board of the Foundation has consisted of the following three (natural) persons:
–             Prof. dr. F.G.A. van der Meché, chairman
–             Drs. S.P. Bertels, treasurer
–             Drs. C.A.C.M. Vehmeijer, secretary
The activities of the board consist of::

• Selecting and approaching (potential) donors.
• Consultation with the department of the Erasmus University Medical Center Rotterdam that is involved in research into GBS to investigate what the GBS Foundation is willing and able to subsidize.
• The actual acquisition of funds from donors.
• Using these funds for scientific research into the cause, treatment and consequences of GBS, and
• Other activities related to the above and the maintenance of the Foundation.

The members of the board do not receive any remuneration for their activities.

The board, and therefore the Foundation, operates independently of donors and beneficiaries.

The Foundation has been designated by the Tax Authorities as an ANBI institution as referred to in Article 6.33, part b of the Income Tax Act 2001 (Public benefit institution).

4. Fundraising

The income of the Foundation will consist of donations and subsidies, donations, bequests and legacies.

The costs of the management of the Foundation will be in reasonable proportion to the expenditure for the purpose of the Foundation. The Foundation will try to keep these costs to a minimum.

The Board of the Foundation will approach potential donors.

5. Fund management/expenditure/distribution

The Board of the Foundation takes the view that the funds received should be managed in a risk-averse manner. To this end, the amounts received are held in an account with the ING bank. The Foundation does not intend to proceed to capital formation, but wishes to spend the amounts received in an appropriate manner and within the foreseeable future, unless the donor determines otherwise at the time of the donation.

The payments made by the Foundation can be in the form of a one-off gift or a multi-year payment, depending on the purpose of the gift.

The Foundation supports the International GBS Outcome Study (IGOS) and related studies. The IGOS is a large-scale international study that started in 2012 and is coordinated by the Erasmus MC in Rotterdam. The IGOS collects data and biomaterials from patients with GBS that are available for scientific research. The IGOS is distinguished from previous GBS research by (a) the standardized and prospective collection of data and biomaterials over a follow-up period of 1-3 years, (b) the large number of 2000 patients, and (c) the large-scale international collaboration between more than 160 hospitals and research centers from 21 countries.

The IGOS data and biobank will be used for research into the cause of GBS and to improve the treatment and management of patients with GBS. Specifically, the research will focus on: (1) the role of previous infections, genetic factors and the immune system in the development of GBS, (2) improving the diagnostic criteria and making the diagnosis of GBS, (3 ) improving the treatment of GBS, e.g. by adapting the current treatment to the individual patient and by developing and testing new forms of treatment for GBS, (4) predicting the clinical course after treatment in individual patients and (5) assessing the long-term consequences of GBS.

6. Policy proposals for 2017-2021 period, actual activities

In this policy period, IGOS research has been supported with equipment for storage of biosamples, auxiliary equipment for large-scale laboratory analysis and equipment for innovative research on single cells. This has also been done in collaboration with other foundations.

The GBS Foundation has provided the following subsidies in the policy period 2017 – 2021:

• 2019 Contribution for the purchase of -80 C freezer € 19,244.-
• 2020 Contribution for the purchase of a so-called ATS 4 device € 14,425.-
• 2021 Contribution for the purchase of equipment for so-called single B-cell analysis € 20,025.50

7. Policy intentions for the period 2022-2026 / activities

Proper research into new causes and treatment is complex and can often only be achieved through intensive international collaboration between clinicians, researchers, patients and their representatives. Researchers are able to receive support from various sources for project-oriented grants. The Foundation therefore focuses on safeguarding continuity as much as possible by filling gaps in the subsidies.

The Foundation will liaise with scientists in the GBS field to monitor developments and encourage appropriate areas of research. She will be assisted by an internationally renowned researcher in this field: Prof. dr. Dr. B.C. Jacobs, affiliated with Erasmus  University Medical Center Rotterdam.

Fundraising costs are kept to a minimum. This means that interest is aroused in particular through networks to support the Foundation financially. In addition, a website draws attention to the activities of the Foundation.