Here you can see which research projects we have funded and with which sums. We finance our research funding primarily from donations from affected families, their relatives, friends and acquaintances, as well as from people and institutions touched by the fate of NBIA children, adolescents and adults.
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 collaborative funding with NBIA sister organizations AISNAF (Italy) and NBIA Disorders Association (USA).
Reversing Brain Iron Overload in BPAN by a Natural Small Molecule.
Young-Ah Seo, University of Michigan
The fundraising total generated 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. Provided $5, 000 to the NBIA Disorders Association from the MDBR German fundraiser for this purpose.
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 total amount 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. hasprovided € 2,217 to the NBIA Disorders Association from the German MDBR fundraiser.
Investigating C19orf12 functions in lipid metabolism.
Arcangela Iuso, Institute of Neurogenomics at Helmholtz Zentrum München, Germany.
Thanks to the fundraising efforts of Helf-Maya and was able to promote Hoffnungsbaum this project alone.
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 funding with NBIA sister organizations AISNAF (Italy) and NBIA Disorders Association (USA).
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 funding with NBIA sister organizations AISNAF (Italy) and NBIA Disorders Association (USA).
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 funding with NBIA sister organizations AISNAF (Italy) and NBIA Disorders Association (USA).
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 TU Munich, the International NBIA Patient Registry at LMU Munich was established in 2011-2015 as part of the EU-funded FP7 project TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration). The funding from Hoffnungsbaum e.V. 2016 is part of a cooperative funding by the members of the NBIA Alliance, to maintain and further develop the NBIA Patient Registry and Biobank as a critical NBIA research infrastructure. The financial support from the NBIA Patient Registry and Biobank Alliance member organizations totals € 84,400.
$ 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 collaborative funding effort with NBIA sister organizations AISNAF (Italy) and NBIA Disorders Association (USA).
Stimulation of the globus pallidus internus in patients with NBIA (formerly Hallervorden-.
Spatz syndrome): prospective analysis of international therapeutic outcomes and development.
of a therapeutic algorithm
Lars Timmermann, Amande Pauls, University of Cologne, Germany
Stimulation of the globus pallidus in NBIA: treatment results and development of a therapeutic algorithm.
Lars Timmermann, University of Cologne, Germany
$ 10,000 (€7.872,56)
Dynamics in brain iron distribution in PKAN
Susan Hayflick, Oregon Health & Science University Portland OR, USA
The project was supported by the Research Fund of the NBIA Disorders Association, El Cajon, CA, USA. Hoffnungsbaum e.V. disbursed its share of $10,000 back in 2004.
Assignments and other subsidies
Hoffnungsbaum e.V. not only funds research projects, but also promotes measures designed to advance research.
Grant for the "8th International Symposium on NBIA and related Diseases"
Lausanne, October 13-15, 2022
The purpose of the grant is to network and support scientific exchange and the formation of collaborations among NBIA researchers.
BPAN Landscape Analysis
Science Compass, Milan (Italy)
Total cost of analysis: € 43,920; The commission is a collaboration of Hoffnungsbaum e.V. with NBIA sister organizations NBIA Disorders Association (US), AISNAF (Italy), Stichting Ijzersterk (Netherlands) and BPAN patient organizations BPAN Warriors (US), BPAN France.
Preparation of an analysis of the medical research landscape with the aim of mapping the state of the science in the field of BPAN, identifying research gaps and opportunities. In addition, organization and facilitation of a meeting of the Scientific and Medical Advisory Board (SMAB) to establish strategic priorities and goals for BPAN.
MPAN Landscape Analysis
Science Compass, Milan (Italy)
Total cost of the analysis: € 23,228; The assignment is a cooperation of Hoffnungsbaum e.V. with the NBIA sister organizations Aisnaf (Italy) and NBIA Disorders Association (USA)
Comprehensive study of the MPAN medical and scientific landscape, outlining the state of knowledge in the field and research gaps and opportunities, and prepare and lead 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 tenders that Hoffnungsbaum e.V. has supported and you will find some more information about the projects mentioned above. You can also see other research projects in which Hoffnungsbaum is involved.
Radfahren für BPAN-Forschung – Million Dollar Bike Ride 2023
Auch in diesem Jahr sammelt der Million Dollar Bike Ride (MDBR) der University of Pennsylvania in Philadelphia Spenden für die Erforschung seltener Erkrankungen. Die 10. Ausgabe des Benefizradrennens wird am 10. Juni 2023...
Fundraising-Aktion des Lions-Club Mühlacker für Hoffnungsbaum e.V.
Mühlacker, Dezember 2022: Im Rahmen eines Club-Abends des Lions-Club Mühlacker hatte das Hoffnungsbaum e.V. Vorstandsmitglied Tiemo Durm die Möglichkeit einen Vortrag über den Verein sowie dessen Ziele und Hintergründe zu halten. Die Inhalte stießen beim Lions-Club...
Two MPAN project grants totaling $140,000 awarded.
Hoffnungsbaum e.V. In partnership with three sister organizations in Europe and the United States, has awarded two MPAN grants to advance research priorities in mitochondrial membrane protein-associated neurodegeneration (MPAN) ...
Mulled wine stand in aid 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 in December after a break of two years...
Pilot Grant of $69,775 announced for BPAN research.
The Million Dollar Bike Ride 2022 (Learn more about this fundraiser) raised $69,775, which has now been put out to bid by the Orphan Disease Center for a research project on BPAN. Researchers can apply for a pilot at the following link....
Cycling for BPAN - Million Dollar Bike Ride 2022 again a great success!
Video: NBIA DA It worked again - in 2022, the Million Dollar Bike Ride (MDBR, https://www.milliondollarbikeride.org/) at the University of Pennsylvania in Philadelphia once again far surpassed the US$20,000 mark: Nearly US$39,000 was raised....
Million Dollar Bike Ride research grant awarded to 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 awarded will be given to Young-Ah Seo of the...
Current call for an MPAN grant reflects clearly defined priorities
Hoffnungsbaum e.V. is partnering with three sister organizations on a current call for grants of up to $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.
A new one-year PKAN research project has been underway at Yale University, New Haven (USA) since July 2021 under the leadership of Professor Choukri Ben Mamoun. The project, entitled: "A High-Throughput Screening for PKAN-Revising Agents," will be conducted in the...
Million Dollar Bike Ride successful again with support from Hoffnungsbaum
Once again this year, the charity bike race at the University of Pennsylvania in Philadelphia in the USA, the Million Dollar Bike Ride 2021 was held virtually. It serves to raise funds for rare disease research, which this year was supported by 52...
NBIA Disorders Association family conference sessions now available online
The virtual conference platform is now open to all, tuition-free, so interested English-speaking families can view 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 Center in Munich. The grant will fund a 27-month research project to uncover essential...
Research team from Rostock receives grant for FAHN-research
Our sister organization in the U.S., the NBIA Disorders Association, has awarded a $45,000 grant to study the NBIA variant FAHN to a team of German scientists studying stem cells from patients with FAHN disease.....
Hoffnungsbaum and Team BPAN Germany contribute to the success of the Million Dollar Bike Ride
This year, the seventh edition of the charity bike race at the University of Pennsylvania in Philadelphia in the USA, the Million Dollar Bike Ride 2020, took place under difficult conditions. It serves to raise funds for research into rare...
New research project on BPAN in Tübingen
Tübingen research group led by Professor Tassula Proikas-Cezanne and Hoffnungsbaum e.V. join forces in research on BPAN Deciphering the causes of rare, neurodegenerative diseases is a lengthy process that involves a lot of effort for those affected by...
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 September 24, 2019, as the father of a daughter with BPAN, as well as in my capacity as Second Chair of Hoffnungsbaum e.V., participated in a public panel discussion on "Autophagy and Its Importance for Health and Neurodegeneration." They...
BPAN research project funded: Iron and neurodegeneration
In 2019, our Italian sister organization AISNAF again led an international call for BPAN research. This was concluded at the end of July with the funding of a new research project on BPAN. Thanks to the joint...
Financing of a second PKAN project after the 2018 call for proposals
Dario Finazzi and his team at the University of Brescia are supported for their research on PKAN zebrafish by AISNAF, Hoffnungsbaum e.V. and NBIA Disorders Association support. As part of the 2018 joint international funding initiative, the research led by Lauriel Earley...
Call for proposals for funding NBIA research projects.
NBIA patient organizations AISNAF (Italy), Hoffnungsbaum e.V.,(Germany) and NBIA Disorders Association (USA) announce a joint funding initiative to award research grants to study the following two NBIA variants:...
Three NBIA patient organizations fund PKAN gene therapy project.
The first international call for research projects by AISNAF as part 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.
The latest research findings were presented at the 6th International Symposium on Neurodegeneration with Brain Iron Storage (NBIA) and Related Disorders. About 70 physicians, scientists and patient representatives from 12 countries came to...
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 celebrated with a major final conference on 15 and...