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Hoffnungsbaum-Newsletter

Association for the Promotion of Research and Treatment of NBIA Diseases
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There is news about NBIA!

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Million Dollar Bike Ride successful again with support from Hoffnungsbaum

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. Its purpose is to raise funds for rare disease research, which this year was represented by 52 organizations. The NBIA variant BPAN was represented for the fifth time by our partner organization NBIA Disorders Association (NBIA DA) ...

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Lena Burbulla discovers new possible BPAN disease mechanisms

Prof. Dr. Lena Burbulla recently successfully completed a project investigating beta-propeller protein associated neurodegeneration (BPAN). The project, funded in 2019 with a total budget of €65,000 by Aisnaf, NBIADA and Hoffnungsbaum e.V. jointly funded, was conducted at Northwestern University in Chicago over a period of 18 months. BPAN is caused by mutations in the WDR45 gene, which is involved in autophagy ...

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News from CoA Therapeutics: Phase 1 trial with new drug for PKAN has started

There is recent news from CoA Therapeutics, Inc, a subsidiary of BridgeBio Pharma, Inc. The California-based company is working on a new potential therapy for PKAN patients. "CoA" stands for coenzyme A, and the very name of the company indicates that it specializes in developing drugs to treat diseases associated with coenzyme A deficiency, such as ...

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Family Conference Sessions of the NBIA Disorders Association now available online

The virtual conference platform is now open to all, free of charge, so interested families with English proficiency can view those sessions that are available as recordings. The program includes patient-focused research updates and information from NBIA specialists at Oregon Health & Science University in Portland, USA, and other NBIA scientists on clinically relevant issues for the most common NBIA forms PKAN, BPAN, MPAN, PLAN, and FAHN. ...

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Cycling for Laurin as part of the Million Dollar Bike Ride

Cycling for Laurin as part of the Million Dollar Bike Ride
As part of the Million Dollar Bike Ride (MDBR), we started a fundraiser in our backyard at home in support of BPAN. Friends, relatives and acquaintances were invited to come by our house on their bikes and bring a donation. In return, we served freshly baked pizza from the wood-fired oven and drinks. Throughout the day we had about 60 guests and ...

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Hoffnungsbaum e.V.
Association for the Promotion of Research and Treatment of NBIA Diseases
newsletter@hoffnungsbaum.de
www.hoffnungsbaum.de
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