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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 access all contributions at any time at News on our website.
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A brief review of 2023
This year, we continued our association's work, launched new research projects and supported those affected. For various reasons, not all board members and active members were fully operational, so we had to concentrate on our core tasks and objectives. We were very busy converting our donation and membership administration to a new system and handing over the bookkeeping to an external service provider. A big thank you to Sigune Lüchtefeld, our treasurer, who has always kept on top of things and continues to maintain contact with our external accountant.
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By making this work easier, we are confident that we will have more time for meetings and exchanges between NBIA families in the coming year. This year we had a very valuable online meeting of BPAN families. Meetings on the other NBIA diseases are to follow in the coming year. We keep thinking that we would love to organize another family conference so that we can meet again in person and, above all, get to know the new families who have joined us. Ideas and support for the organization are very welcome!
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In terms of research funding, we remain in close contact with our international partners and are currently exploring several joint projects planned for the coming year. News about ongoing projects or recently published research can be found in this newsletter. Angelika Klucken continues to be active in research funding and we are very pleased that it advises and supports us wherever it can - thank you very much for this!
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We would like to say a special thank you to Stephan Klucken this year. Since the association was founded in 2002, he has built up the administration and bookkeeping as treasurer of the association and looked after it for almost 20 years. In the last two years, he has gradually handed over his duties, always gladly advised us and supported us as treasurer. At this year's general meeting, he also handed over this position and Christian Berg was elected as his successor. Stephan, many, many thanks for all these years!
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Last but not least, we would like to thank all our donors and are delighted that individual families have once again started fundraising campaigns in their personal environment. Without you, successful work would not be possible!
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The entire Hoffnungsbaum team wishes you a peaceful and reflective Christmas and a good start to the New Year!
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Over the past few months, the OHSU CoA-Z study team has shared the initial study results with all CoA-Z study participants and their families, as well as the broader NBIA community of families, friends, clinical providers and supporters. The following is a translation of a message from Penny Hogarth and the OHSU CoA-Z study team from the November NBIAcure newsletter: https://nbiacure.org/wp-content/uploads/2023/11/NBIAcure-Newsletter-November-2023.pdfWir had already recognized (from previous studies in PKAN mice and ...
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On October 19 and 20, 2023, a BPAN workshop, an NBIA Alliance meeting and an international scientific NBIA conference took place in Warsaw, Poland. Researchers, doctors and patient representatives from many countries came together to exchange information about research projects and results. Possible new research approaches were also discussed and collaborations explored. You can read the conference agenda here: https://nbia-polska.org/data/files/agenda.pdf Participants of the conference, picture: NBIA Poland ...
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For the first time since the pandemic, the NBIA Disorders Association held the 12th International NBIA Family Conference in the USA. For 4 days from May 18 to 21, 2023, a total of 70 NBIA families and 41 speakers, including some NBIA experts and researchers, came together in Houston, Texas under the motto "ReUnited". The following video shows impressions of the conference. Further videos and in particular recordings of some ...
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BPAN families attending the NBIA Disorders Association's (NBIADA) NBIA Family Conference in Houston, Texas, in May received updates on BPAN research from four researchers, beginning with Kira Anderson, a study coordinator with the NBIAcure team at Oregon Health & Science University (OHSU), who is collaborating with Dr. Hogarth, principal investigator of the BPANready study on the natural history of BPAN. The findings from this study ...
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The NBIA Disorders team and NBIA families raised a record amount for BPAN research this year as part of the University of Pennsylvania's (UPenn) Million Dollar Bike Ride (MDBR). More info on this charity bike race can be found here: https://www.hoffnungsbaum.de/mdbr2023/Insgesamt the team raised $64,188, including registration fees and $12,220 from another fundraiser. UPenn contributed another 30,000 dollars, ...
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Dr. Paul Lockhart of the Murdoch Children's Research Institute in Melbourne, Australia, says that while his BPAN research has developed an important "brain cell" model using stem cells from affected BPAN individuals, his next step - screening (systematic series testing) of drugs for treatment - is still awaiting sufficient funding. Dr. Paul Lockhart Lockhart received $60,561 in February 2020 from the ...
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Use our online donation form!
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You can donate directly via our website using SEPA direct debit or Paypal. This simplifies donations enormously and also largely automates the administration of donations for us. Donate now!
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New Hoffnungsbaum flyer available
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The information flyer, which was created from scratch, can be downloaded via info@hoffnungsbaum.de can be ordered free of charge. You are welcome to view the flyer online in advance:
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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 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:
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Association for the promotion of research and treatment of NBIA diseases
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