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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.
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Hoffnungsbaum-Newsletter
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Association for the promotion of research and treatment of NBIA diseases
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There is news about NBIA!
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You can view all contributions at any time at News on our website.
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What information would you like to receive from us?
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In addition to this general list, we have established other 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 email lists as you wish:
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We need support in the work of the association!
Almost all of those who are active 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 prerequisites for collaborative work are in place: We use various online tools and have found an association structure that makes it possible for us to work very well together, even though we are spread all over Germany. The board of directors 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 (AGs). Each working group has clearly defined areas of responsibility and we are happy to welcome anyone who could get involved in even one of these areas. You are also welcome to get an idea for yourself and take part in one of our sessions. We are available to answer any questions - please contact us. More detailed information on the individual working groups can also be found here: https://www.hoffnungsbaum.de/verein/vereinstruktur/
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Recorded lecture on myofasciotomy now available online!
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In his lecture, Dr. Peter Bernius described myofasciotomy as a minimally invasive treatment for shortened muscles very vividly and with a lot of expertise. For those affected, as well as their therapists and physicians, this is a lecture worth seeing. Thankfully, Dr. Peter Bernius was willing to have his lecture recorded. So we can now make it permanently available online:
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I was able to get to know the "Gailinger concept for dealing with swallowing disorders (not only) in children" during a rehabilitation stay of my son at the Hegau Youth Office. Our son has benefited a lot from this and so I am pleased that we have Christina Rauber (MSc and speech therapist) and Dr. med. Paul Jenener (former head physician of early rehabilitation at the Hegau-Jugendwerk Gailingen) were able to present their concept in the context of an online lecture ...
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Steffen Syrbe is a paediatric neurologist and professor of paediatric 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 diseases. He has described various neurological genetic diseases and identified new genetic causes. Currently, one focus of his scientific work is ...
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NBIA scientists will meet to share their research from October 13-15 in Lausanne, Switzerland, as part of 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 high-calibre programme includes presentations, in particular on the most common NBIA variants: PKAN, BPAN, ...
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A team of German scientists who received a $45,000 research grant from the NBIA Disorders Association in 2020 have successfully completed a stem cell model of FAHN to allow researchers to better understand the disease and test potential therapies for the disease. FAHN (Fatty Acid Hydroxylase-associated Neurodegeneration) is a rare form of NBIA. In the case of the ...
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As part of the Million Dollar Bike Ride 2022 (more info on this fundraiser), $69,775 was raised, which has now been tendered by the Orphan Disease Center for a research project on BPAN. Researchers can apply for a Pilot Grant at the following link: https://orphandiseasecenter.squarespace.com/grants/event-five-pk3yg-b7zlm-m4ag9
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Video: NBIA DA It worked again – in 2022, the Million Dollar Bike Ride (MDBR, https://www.milliondollarbikeride.org/) at the University of Pennsylvania in Philadelphia far exceeded the US$ 20,000 mark: Almost US$ 39,000 in donations were collected! The interesting thing about the MDBR is that the donations collected are between US$ 20,000 and 30,000 ...
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New Privacy Policy
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Association for the promotion of research and treatment of NBIA diseases
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