|
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.
|
|
|
|
|
|
Hoffnungsbaum-Newsletter
|
Association for the promotion of research and treatment of NBIA diseases
|
|
|
|
|
|
|
There is news about NBIA!
|
You can access all contributions at any time at News on our website.
|
|
|
|
|
|
|
|
|
The Million Dollar Bike Ride 2021 charity bike race at the University of Pennsylvania in Philadelphia, USA, was once again held virtually this year. It serves to raise funds for research into rare diseases, which were represented by 52 organizations this year. The NBIA variant BPAN was organized for the fifth time by our partner organization NBIA Disorders Association (NBIA DA) ...
|
|
|
|
|
|
|
|
Prof. Dr. Lena Burbulla recently successfully completed a project to research 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 carried out 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 ...
|
|
|
|
|
|
|
|
The latest news from CoA Therapeutics, Inc., a subsidiary of BridgeBio Pharma, Inc. is that the California-based company is working on a potential new therapy for PKAN patients. "CoA" stands for Coenzyme A and the company's name already indicates that it specializes in developing drugs for the treatment of diseases associated with coenzyme A deficiency, such as PKAN.
|
|
|
|
|
|
|
|
The virtual conference platform is now open to all, free of charge, so that interested English-speaking families 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 questions for the most common NBIA forms PKAN, BPAN, MPAN, PLAN and FAHN. ...
|
|
|
|
|
|
|
|
|
As part of the Million Dollar Bike Ride (MDBR), we launched a fundraising campaign in our garden at home in aid of BPAN. Friends, relatives and acquaintances were invited to come by on their bikes and make a donation. In return, we served freshly baked pizza from the wood-fired oven and drinks. Over the course of the day, we had around 60 guests and ...
|
|
|
|
|
|
Association for the promotion of research and treatment of NBIA diseases
|
|
|
|
|
|