q Project Funding | Hoffnungsbaum e.V.

Funded projects

Here you can see which research projects we have funded and with what amounts. We finance our research funding primarily from donations from affected families, their relatives, friends and acquaintances, as well as from people and institutions that are affected by the fate of NBIA children, adolescents and adults.

2022

€ 4.660

Establishing autophagy inducers as novel therapies in cellular and animal models of Beta-propeller Protein-Associated Neurodegeneration (BPAN)
Bertrand Mollereau, Ecole Normale Supérieure Lyon (France)

The fundraising raised by the Million Dollar Bike Ride 2022 resulted in a total grant from the University of Pennsylvania and the NBIA Disorders Association of $69,775.00. Hoffnungsbaum e.V. has provided the NBIA Disorders Association with $4,867 from the German MDBR fundraiser in 2022.

2022

$ 40,000

 

Uncovering mitochondrial signature, dopamine metabolism and alpha-synuclein status in MPAN patient-derived dopaminergic neurons
Lena Burbulla, Ludwig-Maximilians-University, Biomedical Center, Munich, Germany

$ 0

Elucidating the role of NBIA-mutated protein–c19orf12 in lipid homeostasis and mitochondrial dysfunction
Rajnish Bharadwaj, University of Rochester (USA)

The funding of the two projects resulted from a call for proposals totaling $140,000, which was a community initiative of Hoffnungsbaum e.V. with the NBIA sister organizations, Aisnaf (Italy), NBIA Disorders Association (USA), Stichting Ijzersterk (Netherlands).

2022

$ 8,000

Best Practices in the Care and Management of People with PLAN
Susan Hayflick, Oregon Health & Science University (OHSU), Portland, OR, USA.

The total cost is $50,308.00. This grant is a joint funding of the PLAN patient organization INAD Cure Foundation (USA) with the NBIA sister organizations NBIA Disorders Association (USA), Aisnaf (Italy), Hoffnungsbaum e.V. has provided its share of support to the NBIA Disorders Association.

2021

$ 47,500

A High-Throughput Screen for PKAN Reversing Agents
Choukri Ben Mamoun, Yale University, School of Medicine, New Haven, CT, USA

Total cost: $115,000. This research grant was a joint grant with NBIA sister organizations AISNAF (Italy) and NBIA Disorders Association (USA).

2021

$ 5,000

Reversing Brain Iron Overload in BPAN by a Natural Small Molecule
Young-Ah Seo, University of Michigan

The fundraising raised by the Million Dollar Bike Ride 2021 resulted in a total grant from the University of Pennsylvania and the NBIA Disorders Association of $66,366. Hoffnungsbaum e.V. has provided the NBIA Disorders Association with $5,000 from the German MDBR fundraiser.

2020

€ 2.217

Deciphering the causes of mitochondrial network disruption in WDR45-defective cells and their contribution to the BPAN pathology
Fulvio Reggiori, University Medical Center Groningen

The fundraising raised by the Million Dollar Bike Ride 2020 resulted in a total grant from the University of Pennsylvania and the NBIA Disorders Association of $71,471. Hoffnungsbaum e.V. has provided the NBIA Disorders Association with € 2,217 from the German MDBR fundraising campaign.

2020

€ 151.540

Investigating C19orf12 functions in lipid metabolism
Arcangela Iuso, Institute of Neurogenomics at Helmholtz-Zentrum München, Germany

Thanks to the fundraising campaigns of Helf-Maya could Hoffnungsbaum support this project on its own.

2019

€ 21.832

Mechanistic insights into iron accumulation in WDR45 mutant neurons linked to ß-propeller-associated neurodegeneration
Lena Burbulla, Northwestern University Chicago, IL, USA

Total cost: € 65,000. This research grant was a joint grant with NBIA sister organizations AISNAF (Italy) and NBIA Disorders Association (USA).

2018/19

€ 6.000

Understanding and curing PKAN: advancements from the phenotypic rescue of a zebrafish model
Dario Finazzi, University of Brescia, Brescia, Italy

Total cost: € 22,000. This research grant was a joint grant with NBIA sister organizations AISNAF (Italy) and NBIA Disorders Association (USA).

2018

€ 22.334

PANK2 gene therapy for treatment of PKAN and elucidation of disease biology
Lauriel Earley, University of North Carolina, Chapel Hill, USA

Total cost: € 39,500. This research grant was a joint grant with NBIA sister organizations AISNAF (Italy) and NBIA Disorders Association (USA).

2016

€ 32.000

International NBIA Patient Registry, located at the Ludwig-Maximilians-University Munich (LMU)
coordinated by Thomas Klopstock, Friedrich Baur Institute, Munich, Germany

Like the NBIA Biobank at the Technical University of Munich, the International NBIA Patient Registry was established at LMU Munich in 2011-2015 as part of the EU-funded FP7 project TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration). The promotion of Hoffnungsbaum e.V. 2016 is part of a cooperative funding by the members of the NBIA Allianceto maintain and further develop the NBIA Patient Registry and Biobank as a critical NBIA research infrastructure. Financial support from the member organisations of the NBIA Alliance for Patient Registries and Biobanks amounts to a total of € 84,400.

2011

$ 16,116.67 (€ 12.395,95)

Best Practices in the Care and management of People with NBIA
Susan Hayflick, Oregon Health & Science University, Portland, OR, USA

Total Cost: $48,350.01. This grant was a joint grant with the NBIA's sister organizations AISNAF (Italy) and NBIA Disorders Association (USA).

2009

€ 15.000

Stimulation of the globus pallidus internus in patients with NBIA (formerly Hallervorden-
Sparrow syndrome): Prospective analysis of international therapy outcomes and development
of a therapeutic algorithm
Lars Timmermann, Amande Pauls, University of Cologne, Germany

2007

€ 12.000

Stimulation of the Globe Pallidus in NBIA: Treatment Results and Development of a Therapeutic Algorithm
Lars Timmermann, University of Cologne, Germany

2005

$ 10,000 (€7.872,56)

Dynamics in brain iron distribution in PKAN
Susan Hayflick, Oregon Health & Science University Portland OR, USA

Total cost $30,000. The project was funded by the Research Fund of the NBIA Disorders Association, El Cajon, CA, USA, where Hoffnungsbaum e.V. paid out his share of $10,000 back in 2004.

Commissions and other subsidies

Hoffnungsbaum e.V. not only supports research projects, but also promotes measures that are intended to advance research.

2021

€ 7.336,26

BPAN Landscape Analysis
Science Compass, Milan (Italy)

Total cost of the analysis: € 43,920; The order is a cooperation between Hoffnungsbaum e.V. with the NBIA's sister organisations NBIA Disorders Association (US), AISNAF (Italy), Stichting Ijzersterk (Netherlands) and the BPAN patient organisations BPAN Warriors (US), BPAN France.

Preparation of an analysis of the medical research landscape with the aim of recording the state of the art in the field of BPAN, identifying research gaps and opportunities. In addition, he organized and moderated a meeting of the Scientific and Medical Advisory Board (SMAB) to define strategic priorities and goals for BPAN.

2020

7.722,60

MPAN Landscape Analysis
Science Compass, Milan (Italy)

Total cost of the analysis: € 23,228; The order is a cooperation between Hoffnungsbaum e.V. with the NBIA's sister organizations Aisnaf (Italy) and NBIA Disorders Association (USA)

Comprehensive study of the medical and scientific MPAN landscape, outlining the state of knowledge in the field and research gaps and opportunities, as well as preparing and leading a scientific and medical advisory board to discuss priority research questions and develop a research strategy.

Current Calls for Proposals and Research Grants

Here you can see calls for tenders that Hoffnungsbaum e.V. and some of them can find more information about the above-mentioned projects. In addition, you will see other research projects in which Hoffnungsbaum involved.

Two MPAN project grants totaling $140,000 awarded

Two MPAN project grants totaling $140,000 awarded

Hoffnungsbaum e.V. in conjunction with three sister organizations in Europe and the US, has awarded two MPAN grants to advance research priorities in the field of mitochondrial membrane protein-associated neurodegeneration (MPAN)...

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Call for proposals on MPAN research open by May 2, 2022

Call for proposals on MPAN research open by May 2, 2022

Associazione Italiana Sindromi Neurodegenerative da Accumulo di Ferro (AISNAF, Italy), Hoffnungsbaum e.V. (HoBa, Germany), NBIA Disorders Association (NBIADA, USA), and Stichting Ijzersterk (The Netherlands) are soliciting the submission of research projects by...

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PKAN drug screening at Yale University

PKAN drug screening at Yale University

Since July 2021, a new one-year PKAN research project has been underway at Yale University, New Haven (USA) under the direction of Professor Choukri Ben Mamoun. The project, entitled: "A high-throughput screen for PKAN-revising agents", is being carried out as part of...

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New research project on BPAN in Tübingen

New research project on BPAN in Tübingen

Tübingen research group led by Professor Tassula Proikas-Cezanne and Hoffnungsbaum e.V. Joining forces in the research of BPAN Deciphering the causes of rare, neurodegenerative diseases is a lengthy process that is difficult for those affected with a lot of...

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Progress at NBIA Symposium & NBIA Alliance Meeting

Progress at NBIA Symposium & NBIA Alliance Meeting

At the 6th International Symposium on Neurodegeneration with Iron Storage in the Brain (NBIA) and Related Diseases, the latest research findings were presented. Around 70 doctors, scientists and patient representatives from 12 countries attended...

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TIRCON project ended with final conference in October 2015

TIRCON project ended with final conference in October 2015

In October 2015, the international research project TIRCON ("Treat Iron-Related Childhood-Onset Neurodegeneration"), which was funded by the European Union for four years, ended as planned. This event was marked by a grand final conference on 15 and 15 December.

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