MDBR sets donation record and makes 2 scholarships possible

MDBR sets donation record and makes 2 scholarships possible

The NBIA Disorders team and NBIA families raised a record amount for BPAN research this year as part of the University of Pennsylvania's Million Dollar Bike Ride (MDBR) (UPenn). More information about this charity bike race can be found here: https://www.hoffnungsbaum.de/mdbr2023/

In total, the team raised $64,188, including registration fees and $12,220 from another fundraiser. The UPenn contributed another $30,000, and another $25,814 went to the BPAN Fund because the recipient of the 2019 MDBR grant, Dr. Paul Lockhart of Melbourne, Australia, ran into trouble during the pandemic and was unable to spend that amount. So, a total of $120,000 is available for two BPAN research grants of $60,000. UPenn will administer the grants and has invited BPAN researchers to submit a unilateral letter of intent by September 15, 2023. Complete applications by invitation were due on October 16, 2023. For more information, see the call for proposals on the NBIA Disorders Association (NBIA DA) website: https://www.nbiadisorders.org/research/grants-program-funding-opportunities

As in previous years, the NBIA DA writes the application criteria and selects the reviewers. In addition, the NBIA DA will be kept informed by the researchers so that the NBIA community can be informed of the progress. The funding period runs from 1 February 2024 to 31 January 2025.

Participants of the "NBIA Disorders" team on the day of the race in Philadelphia. Image: NBIA DA

The MDBR was held both in-person and virtually, a popular pandemic-era option that allows NBIA families unable to travel to Philadelphia to attend. In total, there were 29 team members who fundraised, drove, volunteered, and encouraged others to donate for them. The volunteers of the "NBIA Disorders" team were also on duty at a rest stop with water and snacks for the cyclists.

As we celebrate the extraordinary achievement of NBIA Disorders, we also recognize the generosity of the donors and supporters who have made this success possible. Their contributions, both financial and emotional, have been instrumental in advancing research into BPAN, now the most common NBIA condition.

Slightly altered translation of the original article by Patricia Wood from the NBIA DA's September newsletter:
https://www.nbiadisorders.org/images/newsletters/NBIA_Disorders_Association_September_2023_Newsletter.pdf

Cycling for BPAN research - Million Dollar Bike Ride 2023

Cycling for BPAN research - Million Dollar Bike Ride 2023

Once again this year, the Million Dollar Bike Ride (MDBR) at the University of Pennsylvania in Philadelphia is raising funds for research into rare diseases. The 10th edition of the charity bike race will take place on June 10, 2023. 

https://www.milliondollarbikeride.org/

Once again, it is possible to participate virtually. This gives us in Germany the chance to be there again. Be it just by collecting donations or by actually cycling along, having fun and at the same time drawing attention to NBIA and especially BPAN with photos.

This year, 39 different organizations are participating and the NBIA variant BPAN is again represented by our partner organization NBIA Disorders Association (NBIA DA) in the USA.

The interesting thing about the MDBR is that the donations collected are doubled by the University of Pennsylvania for a sum between US$ 20,000 and 30,000. Last year, a $69,755 BPAN research grant was awarded to Professor Bertrand Mollereau, at ENS-Lyon in France. Our goal is to surpass the US$ 20,000 mark again in 2023 together with the NBIA DA in order to initiate a new research project!

You can participate virtually as a participant and document your activities or simply donate. Officially, however, every active participant must register. However, virtual participation is free of charge. Please register here: https://www.milliondollarbikeride.org/2023-cyclist-registration

Markus Nielbock has once again created a donation page: https://charity.pledgeit.org/f/Cj497fpqdR Through this page, you can donate directly to the organizers of the MDBR for BPAN research by credit card.

Impressions from last year, video: NBIA DA

However, as in previous years, you can also make your donations to Hoffnungsbaum transfer. As "Team BPAN Germany", we collect these funds and then transfer them to our partners in the USA. In this way, you will receive proof of tax settlement from us for your donation. Please indicate "MBDR 2023" or "Team BPAN Germany" as the reason for payment. It is best to use our online donation form: https://www.hoffnungsbaum.de/spenden/

From now on, you are all called upon to work with friends, relatives, acquaintances, celebrities, athletes, colleagues, sponsors, ... To become part of this team and to cycle and raise funds for BPAN research. Encourage people around you to participate. Launch actions in your environment and draw attention to BPAN.

Post photos and videos on social media to raise awareness of the action under the hashtags: #MDBR2023 and #TeamBPANGermany or on Twitter and Instagram @MDBRide4Rare and @milliondollarbikeride on Facebook. Take advantage of our photos and videos of our Team BPAN Germany Poster. You can also send us pictures to publish on this page or on our team website.

You are welcome to document your routes via the MDBR's STRAVA portal: https://www.milliondollarbikeride.org/strava

We are very confident that with your support and together with the NBIA DA, we will surpass the US$ 20,000 mark and double the donation amount again.

Contact person for the "Team BPAN Germany" of the MDBR 2023 is Markus Nielbock: markus.nielbock@hoffnungsbaum.de

 
 

German-British family takes up the fight with BPAN

German-British family takes up the fight with BPAN

Kelly Sayers and Oliver Feiler are the parents of two children: Max (8 years old) and Emily (5 years old). The family lives near London, England. 1 1/2 years ago, they received the shocking news that Emily had contracted BPAN. BPAN (beta-propeller protein-associated neurogeneration) is currently the most common variant of NBIA (neurodegeneration with iron storage in the brain), accounting for about 40% of all diagnoses.

"After initial difficulties in dealing with the diagnosis, we started collecting donations 2 weeks ago and introducing this very rare disease to a wider audience," says Oliver Feiler. The family works closely with the children's hospital Great-Ormond-Street Hospital (GOSH) in London and the scientist and physician Prof. Manju Kurian. She is one of the world's leading pediatric neurologists and an expert on NBIA.

Kelly Sayers and Oliver Feiler have recently started asking for support from their friends and professional networks. To this end, they have founded the fundraising campaign "Emily Feiler's Fight": https://www.justgiving.com/fundraising/emilyfeilersfight

But they don't want to leave it at that, but organize several fundraising events every year to constantly collect more donations for research into the disease and to work towards a therapy. Among the ideas is the ascent of the three highest mountains in Great Britain as well as various marathons for BPAN. The family also has good contacts with celebrities from sports and society, who can act as multipliers for their cause.

Kelly and Oliver have already achieved success in this regard. The BBC will produce a short report on Emily and BPAN and broadcast it nationwide. Previous similar broadcasts have been able to help generate significant donations.

Photo: Kelly Sayers

Guide with recommendations for the treatment of BPAN available

Guide with recommendations for the treatment of BPAN available

Researchers from various medical institutions around the world, with the support of affected families, recently published a guide for the treatment of beta-propeller protein-associated neurodegeneration (BPAN). The primary purpose of the publication is to support physicians in providing the best possible care for people with this most common form of NBIA today. The article is available online at: https://doi.org/10.1111/dmcn.14980

It contains recommendations for the evaluation and treatment of individuals with beta-propeller protein-associated neurodegeneration (BPAN), developed by experienced experts in the treatment of this disease. The guide covers the clinical manifestations and progression of the disease, imaging findings, epilepsy features and genetics. In addition, the article contains suggestions for doctors, ranging from the initial examination to the treatment of the disease throughout life.

Most doctors have free access to the full article. Therefore, we would like to encourage all families affected by BPAN to inform their treating physicians about it and to discuss the results with them. The manuscript of the treatment recommendations is currently not available to the general public free of charge. However, the main and most important contents were presented by Markus Nielbock, the chairman of Hoffnungsbaum e. V., inserted into the corresponding German Wikipedia article:

https://de.wikipedia.org/wiki/Beta-Propeller-Protein-assoziierte_Neurodegeneration

RARE-X: A new, secure database for exchanging BPAN health data

RARE-X: A new, secure database for exchanging BPAN health data

BPAN sufferers and their relatives are invited to post health information about the disease on the new, secure platform RARE-X. The purpose of this database is to collect information about rare diseases such as BPAN and make it available for research. By linking datasets from different diseases, researchers can gain new insights that can be of crucial use in the development of therapies.

Launched on 6 August, the online data platform RARE-X-BPAN aims to promote data sharing and thus accelerate the dissemination of information and the pace of BPAN research. The data is collected and stored in a decentralised manner by means of standardised questions and is only brought together for analysis.

The platform is free to use for families. It is important that it keeps health information confidential by only providing anonymized data, i.e. it is not linked to individual names. Individuals and families affected by beta-propeller protein-associated neurodegeneration (BPAN) decide for themselves whether to allow or deny access to their personal health data for a research project.

The platform is currently accessible to English-speaking BPAN families. Those who wish to participate can access the website at: https://bpan.rare-x.org
A translation is planned for next year.

Six patient organizations representing people with BPAN (NBIA Disorders Association in the U.S., Hoffnungsbaum e.V. in Germany, Stichting Ijzersterk in the Netherlands and three organisations dedicated exclusively to BPAN: BPAN Warriors in the USA, BPAN France and Autour du BPAN, both in France) have made a start with RARE-X, a newly founded non-profit organisation. Other rare diseases are gradually being included.

Additional information about the RARE-X database, what it does and how it works is summarized in an online lecture, which you can reach at:
https://www.youtube.com/watch?v=_QOZsX1SKOw The lecture in English is provided with subtitles, which can be automatically translated into German.

For more information about the non-profit organization RARE-X, please visit: https://rare-x.org

 

Original article by Patricia Wood, translated and revised by Markus Nielbock

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