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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 again successful with support from Hoffnungsbaum

Million Dollar Bike Ride again successful with support from Hoffnungsbaum
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 raise funds for rare disease research, which was represented by 52 organizations this year. The NBIA variant BPAN has been identified for the fifth time by our partner organization, the 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 to investigate beta-propeller protein-associated neurodegeneration (BPAN). The project, 2019 with a total budget of €65,000 from Aisnaf, NBIADA and Hoffnungsbaum e.V. 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 already indicates in the name of the company that it specializes in developing drugs for the treatment of diseases associated with coenzyme A deficiency, such as ...

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NBIA Disorders Association family conference sessions now available online

The virtual conference platform is now open to everyone free of charge, allowing interested families with English language skills to watch those sessions that are available as a recording. The program includes patient-focused research updates as well as information from NBIA specialists at Oregon Health & Science University in Portland, USA, and other NBIA scientists on clinically relevant questions for the most common forms of NBIA: 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 for BPAN. Friends, relatives and acquaintances were invited to come by by bike and bring a donation. In return, there was freshly baked pizza from the wood-fired oven and drinks. Over the course of 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
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