|
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.
|
|
|
|
What information would you like to receive from us?
|
In addition to this general list, we have set up further special lists for individual NBIA variants and a special list for researchers/clinicians. Under the following link you can now subscribe or unsubscribe to these e-mail lists as you wish:
|
|
|
|
We need support for the association's work!
Almost all of those working for the association are employed and have a child affected by NBIA in the family - our resources are limited. We know how to deal with this, but we realize that the tasks should be spread over more shoulders. The conditions for collaborative working are in place: We use various online tools and have found an association structure that makes it possible for us to work together very well, even though we are spread all over Germany. The board and other active members meet every few weeks via Zoom, we exchange information and files via a NextCloud and we work in largely independent working groups (WGs). Each working group has clearly defined areas of responsibility and we are happy to welcome anyone who would like to get involved in just one of these areas. You are also welcome to take a look for yourself and attend one of our meetings. We are available for questions - please contact us. You can also find more detailed information on the individual working groups here: https://www.hoffnungsbaum.de/verein/vereinstruktur/
|
|
|
|
|
Recorded lecture on myofasciotomy now available online!
|
In his lecture, Dr. Peter Bernius described myofasciotomy as a minimally invasive treatment for shortened muscles very clearly and with a great deal of expertise. It was a lecture well worth seeing for those affected as well as their therapists and doctors. Thankfully, Dr. Peter Bernius was willing to have his lecture recorded. We can now make it permanently available online:
|
|
|
|
|
|
|
|
|
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 ...
|
|
|
|
|
|
|
|
|
Steffen Syrbe is a pediatric neurologist and Professor of Pediatric Epileptology at Heidelberg University Hospital. He has been working with children with neurodevelopmental disorders for over 15 years. During this time, he has developed a strong interest in the genetic causes of epilepsies and neurological disorders. He has helped describe various neurological genetic diseases and identified new genetic causes. Currently, one focus of his scientific work is ...
|
|
|
|
|
|
|
|
|
NBIA scientists will meet to share their research from October 13-15 in Lausanne, Switzerland, at the 8th International NBIA Symposium. More than 20 scientists and physicians from all over the world will present the results of their NBIA projects and learn about the latest developments in current NBIA research. The top-class program includes lectures on the most common NBIA variants PKAN, BPAN, ...
|
|
|
|
|
|
|
|
|
A German team of scientists, who received a $45,000 research grant from the NBIA Disorders Association in 2020, has successfully produced a stem cell model of FAHN to help researchers better understand the disease and test potential therapies for it. FAHN (Fatty Acid Hydroxylase-associated Neurodegeneration) is a rare form of NBIA. In the case of the ...
|
|
|
|
|
|
|
|
|
The Million Dollar Bike Ride 2022 (more information on this fundraising campaign) raised $69,775, which the Orphan Disease Center is now offering for a research project on BPAN. Researchers can apply for a pilot grant at the following link: https://orphandiseasecenter.squarespace.com/grants/event-five-pk3yg-b7zlm-m4ag9
|
|
|
|
|
|
|
|
|
Video: NBIA DA It worked again - in 2022, the Million Dollar Bike Ride (MDBR, https://www.milliondollarbikeride.org/) of the University of Pennsylvania in Philadelphia was able to far exceed the US$ 20,000 mark: Almost US$ 39,000 was raised in donations! The interesting thing about the MDBR is that the donations collected were between US$ 20,000 and US$ 30,000 from ...
|
|
|
|
|
|
New privacy policy
|
|
|
Association for the promotion of research and treatment of NBIA diseases
|
|
|
|
|
|
|
|
