|
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.
|
|
|
|
Donate now for BPAN!
|
As part of the Million Dollar Bike Ride, it is once again possible to double your donation for BPAN research until June 26, 2022! More information here:
|
|
|
|
|
|
|
|
|
Hoffnungsbaum e.V. wanted to organize the 9th NBIA Family Conference in Germany in September 2022 at the youth hostel in Heilbronn. We were very much looking forward to finally organizing a face-to-face meeting of NBIA families again after two years of the pandemic. Unfortunately, several active association and board members are now so busy with their families that we are forced to postpone the family conference indefinitely.
|
|
|
|
|
|
|
|
NBIA disorders are often accompanied by restricted movement, alternating muscle tension and involuntary cramps (dystonia), which cause the muscles to become increasingly shortened. Under certain conditions, myofasciotomy can provide some relief. Dr. Peter Bernius, Chief Physician at the Center for Pediatric and Neuro-Orthopedics at the Schön Klinik München Harlaching, has kindly agreed to present this treatment option to us in an online lecture. All NBIA families are invited to ...
|
|
|
|
|
|
|
|
|
I was able to get to know the "Gailinger concept for dealing with swallowing disorders (not only) in children" during my son's rehabilitation stay at the Hegau-Jugendwerk. Our son benefited greatly from it and so I am delighted that we were able to persuade Christina Rauber (MSc and speech therapist) and Dr. med. Paul Diesener (former head physician of early rehabilitation at the Hegau-Jugendwerk Gailingen) to present their concept in an online ...
|
|
|
|
|
|
|
|
We hereby issue the following press release from CoA Therapeutics: "CoA Therapeutics and BridgeBio Pharma Present Data from Phase 1 Study in Healthy Individuals to Support Development of BBP-671 for PKAN and Organic Acidemia On May 26, 2022, CoA Therapeutics and its parent company BridgeBio Pharma presented interim results from a Phase 1 study of BBP-671 in 77 healthy individuals. BBP-671, which has not been approved by the FDA ...
|
|
|
|
|
|
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/
|
|
|
|
|
New address and telephone number
|
The office (postal address) of Hoffnungsbaum has been transferred to Sigune Lüchtefeld, as she will be responsible for the association's administration in future.
|
Wilhelm-Gülpen-Str. 22
D-52146 Würselen
|
|
In addition, Hoffnungsbaum now has a new telephone number: +49 (0)2405 69 99 781
|
|
Please use the answering machine if none of us answers the phone personally - we will be happy to call you back in any case!
|
|
|
|
Association for the promotion of research and treatment of NBIA diseases
|
|
|
|
|
|
|
|
