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.
MDBR sets donation record and makes 2 scholarships possible
The NBIA Disorders team and NBIA families raised a record amount for BPAN research this year as part of the University of Pennsylvania's (UPenn) Million Dollar Bike Ride (MDBR). You can find more information about this charity bike race here:...
Cycling for BPAN research - Million Dollar Bike Ride 2023
This year, the Million Dollar Bike Ride (MDBR) at the University of Pennsylvania in Philadelphia is once again raising funds for research into rare diseases. The 10th edition of the charity bike race will take place on June 10, 2023....
Fundraising campaign by the Mühlacker Lions Club for Hoffnungsbaum e.V.
Mühlacker, December 2022: As part of a club evening organized by the Mühlacker Lions Club, board member Hoffnungsbaum e.V. Board member Tiemo Durm had the opportunity to give a presentation about the club and its aims and background. The contents were well received by the Lions Club...
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)...
Mulled wine stand for the benefit of Hoffnungsbaum and Team Bananenflanke
The Sandbox Friends, Melanie Schratzenstaller, Michael Bogner, Stephan Thalhammer, Stefan Huber, Ramona Klement and Lisa Kaltenecker, from Eberspoint (south of Landshut) organized a mulled wine stand again on the first weekend of December after a break of two years...
Pilot Grant in the amount of $69,775 announced for BPAN research
The Million Dollar Bike Ride 2022 (more information on this fundraising campaign) raised $69,775, which the Orphan Disease Center is now offering for a research project on BPAN. Researchers can apply for a pilot project at the following link.
Cycling for BPAN - Million Dollar Bike Ride 2022 a complete success again!
Video: NBIA DA It worked again - in 2022, the Million Dollar Bike Ride (MDBR, https://www.milliondollarbikeride.org/) of the University of Pennsylvania in Philadelphia was able to far exceed the US$ 20,000 mark: Almost US$ 39,000 was raised...
Million Dollar Bike Ride research grant awarded for BPAN
The Center for Rare Diseases at the University of Pennsylvania, supported by the NBIA DA, has awarded a research grant to study the role of iron in the NBIA disease BPAN. The $66,366 grant will be awarded to Young-Ah Seo of the...
Current call for MPAN funding reflects clearly defined priorities
Hoffnungsbaum e.V. is partnering with three sister organizations on a recent call for funding of up to USD 145,000 for one two-year or two one-year MPAN research projects:...
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...
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...
Million Dollar Bike Ride with the support of Hoffnungsbaum Successful again
Also this year, the charity bike race of the University of Pennsylvania in Philadelphia in the USA, the Million Dollar Bike Ride 2021, was held virtually. It is used to collect donations for research into rare diseases, which this year will be funded by 52...
NBIA Disorders Association family conference sessions now available online
The virtual conference platform is now open to all, free of charge, so that interested families with English language skills can watch those sessions that are available as recordings. The program includes patient-focused research updates...
Hoffnungsbaum e.V. finances MPAN project at Helmholtz Zentrum München
Hoffnungsbaum e.V. awards funding of € 151,540 to Dr. Arcangela Iuso and her team from the Institute of Neurogenomics at the Helmholtz Centre in Munich. The funding will be used to finance a 27-month research project aimed at uncovering significant...
Research team from Rostock receives grant for FAHN-research
Our sister organization in the U.S., the NBIA Disorders Association, has a grant to research the NBIA variant FAHN awarded $45,000 to a team of German scientists who collected stem cells from patients with FAHN-Disease investigated....
Hoffnungsbaum and Team BPAN Germany contribute to the success of the Million Dollar Bike Ride
This year, the seventh edition of the University of Pennsylvania charity bike race in Philadelphia in the USA, the Million Dollar Bike Ride 2020, took place under difficult conditions. It is used to collect donations for the research of rare...
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...
As Hoffnungsbaum representative at the Autophagy Congress in New York
Markus Nielbock was invited to a workshop in New York by Prof. Christian Behl, head of the Institute of Pathobiochemistry at the University of Mainz.
Autophagy Congress in Tübingen with panel discussion
On 24 September 2019, as the father of a daughter with BPAN and in my capacity as Vice-Chairman of Hoffnungsbaum e.V., participated in a public panel discussion on "Autophagy and its implications for health and neurodegeneration". They...
BPAN research project funded: Iron and neurodegeneration
In 2019, our Italian sister organisation AISNAF once again led an international call for BPAN research. This was completed at the end of July with the financing of a new research project on BPAN. Thanks to the...
Financing of a second PKAN project following the 2018 call
Dario Finazzi and his team at the University of Brescia are being awarded for their research on PKAN zebrafish by AISNAF, Hoffnungsbaum e.V. and NBIA Disorders Association. As part of the 2018 Joint International Funding Initiative, Lauriel Earley's...
Call for proposals for the funding of NBIA research projects
The NBIA patient organisations AISNAF (Italy), Hoffnungsbaum e.V.,(Germany) and NBIA Disorders Association (USA) announce a joint funding initiative to award research grants for the study of the following two NBIA variants:...
Three NBIA Patient Organizations Fund PKAN Gene Therapy Project
The first international call for research projects by AISNAF within the framework of a joint initiative with Hoffnungsbaum e.V. (Germany) and the NBIA Disorders Association (USA) has been completed: A project to develop a gene therapy for PKAN...
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...
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.