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You can find an English version of the newsletter online. If it is not automatically translated you can change the language at the very end of it.
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Hoffnungsbaum-Newsletter
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Association for the promotion of research and treatment of NBIA diseases
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There is news about NBIA!
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You can access all contributions at any time at News on our website.
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Get involved! - New association structure of Hoffnungsbaum e.V.
The Executive Board and other active members developed a new association structure in a strategy meeting in 2021 due to a generational change. You are very welcome to support the active work of the association in the individual working groups (WGs). Please contact us if you can support us in a specific area! You can find more detailed information on the individual working groups here: https://www.hoffnungsbaum.de/verein/vereinstruktur/
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CoA Therapeutics, a BridgeBio-affiliated company, has completed a Phase I study in healthy volunteers evaluating the safety, tolerability and drug-like properties of BBP-671. We are presenting the healthy volunteer data from the Phase I study at the 4th Pan American Congress on Parkinson's Disease and Movement Disorders, May 26-28, 2022. In 2022, we are focusing on two activities: improving our formulation for ...
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The Californian company CoA Therapeutics is currently preparing a clinical trial with a new drug for PKAN patients. In order to make this study as patient-oriented as possible, CoA Therapeutics developed a survey last year in which PKAN patients and their families could make their voices heard. The company actively involved representatives of the international NBIA patient organizations in the preparations. ...
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Kelly Sayers and Oliver Feiler are parents of two children: Max (8 years) and Emily (5 years). The family lives near London, England. 1 ½ years ago, they received the devastating news that Emily had BPAN. BPAN (beta propeller protein-associated neurogeneration) is currently the most common variant of NBIA (neurodegeneration with iron accumulation), accounting for around 40% of all diagnoses ...
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Noah Rusch gives insights into the challenges and family life with his son Laurin, who suffers from BPAN, in an interview. The interview was published by the Munich Outpatient Children's Hospice Foundation to mark Rare Disease Day 2022: https://www.kinderhospiz-muenchen.de/zum-tag-der-seltenen-erkrankungen-2022/ Photos: Noah Rusch
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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. Young-Ah Seo from the University of Michigan will receive the $66,366 grant:https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/iem8yjznwv916kubyg5h4vdsqbddem-ac78h The funding was made possible by the Million Dollar Bike Ride 2021, which was also supported by "Team BPAN Germany".
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Hoffnungsbaum e.V. is cooperating with three sister organizations in a current call for funding of up to USD 145,000 for one two-year or two one-year MPAN research projects: https://www.hoffnungsbaum.de/call-for-proposals-on-mpan-research-2022/ The joint campaign is financially supported by our German NBIA patient organization Hoffnungsbaum e.V. as well as AISNAF (Italy), NBIA Disorders Association (USA) and Stichting Ijzersterk (Netherlands). We invite researchers to submit their proposals to study the ...
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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 investigators committed to advancing the understanding of Mitochondrial membrane Protein-Associated Neurodegeneration (MPAN) in order to pave the way to targeted treatments. MPAN is caused by mutations of the ...
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Hoffnungsbaum e.V. will be organizing the 9th NBIA Family Conference in Germany from Friday, 16 - Sunday, 18 September at the Heilbronn Youth Hostel. We are delighted to finally be able to give NBIA families in particular, but also doctors and NBIA researchers, the opportunity to get to know each other again after four years. Family conferences are wonderful opportunities to exchange personal experiences, to gain information about current developments in various areas and to ...
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New address and telephone number
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The office (postal address) of Hoffnungsbaum has been transferred to Sigune Lüchtefeld, as she will be responsible for the association's administration in future.
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Wilhelm-Gülpen-Str. 22
D-52146 Würselen
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In addition, Hoffnungsbaum now has a new telephone number: +49 (0)2405 69 99 781
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Please use the answering machine if none of us answers the phone personally - we will be happy to call you back in any case!
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Association for the promotion of research and treatment of NBIA diseases
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