THE JOHN GRUBE FOUNDATION eV
We, the John Grube Foundation e.V. aim to improve access to information and communication for people affected by the disease Granulomatosis with Polyangiitis - also known as Morbus Wegener.
We also promote research and other scientific projects that aim to vanquish GPA.
To learn more about the disease Granulomatosis with Polyangiitis / Morbus Wegener please visit the website we created, GPA-Info.org. It explains the disease in an understandable manner and gives an experience report of a young patient who has now lived with the disease for years.
It also keeps you posted to the newest advances in research.
The John Grube Foundation e.V. was founded in August 2017. The reason for it was the sudden death of our beloved son and friend John Grube. He died of the implications of an extraordinarily strong push of the disease Granulomatosis with Polyangiits. But just because John has lost his fight, we do not want to give up fighting and therefore continue to campaign against this disease. That is why we founded this foundation – John surely would have liked that thought and we are certain, that he would have done the same for us.
Patient Guide
The John Grube Foundation, in cooperation with a Germany-wide team of doctors headed by Prof. Dr. Bernhard Hellmich, Dr. Peer Aries and Dr. Christoph Iking-Kohnert published a patient guide. The guide was published by Trias Verlag in December and is intended to help those affected in their struggle with vasculitis. It is available wherever books are sold.
Granulomatosis with polyangiitis
(Wegener's disease)
Granulomatosis with polyangiitis (GPA), also known as Wegener’s disease, is an autoimmune disease. The systemic disease of the vascular system leads to inflammation of blood vessels. This leads to a deficient blood supply to the affected organs. In general, any tissue can be affected. Typical organs which are affected by GPA and therefore are building granulomas (inflammations) are the lungs, kidneys, eyes, ears, nose, and the throat areas. The causes of the occurrence of this autoimmune disease are unknown so far.
The disease belongs to the so-called ANCA-associated small vessel vasculitis and is rare: Every year 5-12 people per one million inhabitants are affected by GPA. The disease usually occurs between the ages of 40 and 50; women and men are equally affected.
What are the donations used for?
We want to show you the utmost transparency in our work for the foundation, especially with money issues: Anybody should know, at any time, how the money is used, that you donated. That is why we list all the projects that we have already accomplished, that we are working on right now, or that we plan to pursue in the near future.
Our most important goal was to improve the information that patients can find online. We want to provide reliable information for all the people affected by GPA, which is scientifically correct but understandable for non-doctors.
Therefore we created a website which comprehended the most important facts and explains the medical context, all written by physicians.
It will also inform visitors about current research projects and give real life examples of patients and how they live with the disease.
We accomplished that goal in February 2019: GPA-Info.org
We also promote research and are looking for projects in this field to support.
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