Million Dollar Bike Ride research grant awarded for BPAN

The Center for Rare Diseases at the University of Pennsylvania, supported by the NBIA DA, has awarded a research grant to study the role of iron in the NBIA disease BPAN. Young-Ah Seo of the University of Michigan will receive the $66,366 award:
https://www.orphandiseasecenter.med.upenn.edu/awarded-grants/iem8yjznwv916kubyg5h4vdsqbddem-ac78h

The funding came from the Million Dollar Bike Ride 2021, which was also supported by "Team BPAN Germany" with $5,000, as we reported here:
https://www.hoffnungsbaum.de/mdbr2021erfolg/

Cycling for Laurin as part of the Million Dollar Bike Ride

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Cycling for Laurin as part of the Million Dollar Bike Ride

As part of the Million Dollar Bike Ride (MDBR) we launched a fundraising campaign in our garden at home in aid of BPAN. Friends, relatives and acquaintances were invited to come by on their bikes and make a donation. In return, we served freshly baked pizza from the wood-fired oven and drinks. We had around 60 guests throughout the day and many of them actually came by bike. We hadn't seen some of them for a long time, so we had a wonderful day in great weather under our chestnut tree. Thanks to brilliant teamwork and the fact that not all the guests were there at once, the day was very relaxed for everyone involved - many thanks to all the helpers, big and small! This gave me enough time to talk to the guests about BPAN and tell them about our association's work at Hoffnungsbaum . Laurin also enjoyed the little hustle and bustle and in the evening not only were our bellies full, but also our donation box - a total of just over €3000, which went to the Hoffnungsbaum e.V. to the NBIA Disorders Association (NBIA DA) will be transferred to the USA, where they will then flow into the worldwide Million Dollar Bike Ride donation pot, which will then be doubled by the University of Pennsylvania, as the $ 20,000 mark has already been exceeded! Many, many thanks to everyone who took part and we look forward to next year!

By the way: donations can still be made by bank transfer, as we will not be transferring the total amount to the USA until the end of June:

Donation account: DE67 3305 0000 0000 305979
Purpose: Cycling for Laurin - BPAN

Photos: Noah Rusch

Cycling for BPAN – Million Dollar Bike Ride 2021

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Cycling for BPAN – Million Dollar Bike Ride 2021

It's that time of year again: the 8th edition of the Million Dollar Bike Ride (MDBR) at the University of Pennsylvania in Philadelphia. Due to the pandemic, this charity bike race will once again not only take place in the USA, but virtually all over the world! This gives us in Germany the chance to be part of it 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, over 40 different organizations are taking part and the NBIA variant BPAN will once again be 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 amounts between US$ 20,000 and US$ 30,000. Last year, a research grant for BPAN in the amount of US$ 71,471 was awarded to the University of Groningen (Netherlands). A team of researchers there will investigate the causes of disorders of certain processes in cells affected by BPAN, thus contributing to a better understanding of how BPAN develops:

https://www.movementdisordersgroningen.com/en/news/grant-awarded-to-study-bpan-pathology.

Our goal is to exceed the US$ 20,000 mark again in 2021 together with the NBIA DA in order to initiate another new research project!

Impressions of the previous Million Dollar Bike Rides and the donations made:

Video: NBIA DA, https://nbiadisorders.org/mdbr-2021

Markus Nielbock, second chairman of Hoffnungsbaum e.V.has once again registered "Team BPAN Germany", which will start with Hoffnungsbaum . You are all invited to become part of this team with friends, relatives, acquaintances, celebrities, athletes, colleagues, sponsors, ... without having to register separately, and to cycle and collect donations for BPAN research. Encourage people around you to take part. Start campaigns in your area and draw attention to BPAN. Publish photos and videos on social media to draw attention to the campaign using the hashtags: #pennmedmdbr2021 and #TeamBPANGermany or on Twitter and Instagram @MDBRide4Rare and on Facebook @milliondollarbikeride. Use our in photos and videos Team BPAN Germany Poster. You can also send us pictures for publication on this page or on our Team website.

Please send the donations directly to Hoffnungsbaum with the note "Team BPAN Germany". Hoffnungsbaum will then transfer them collectively to our partner organization NBIA Disorders Association (NBIA DA). We are very confident that with your support and together with the NBIA DA we will exceed the US $ 20,000 mark and once again double the amount raised.

The contact person for the "Team BPAN Germany" website is Markus Nielbock: markus.nielbock@hoffnungsbaum.de

Please send donations directly to our donation account with the reference "Team BPAN Germany": DE67 3305 0000 0000 305979

Milly and Laurin were on the road for BPAN research!
Photos: Markus Nielbock, Noah Rusch

7th International NBIA Symposium in Lausanne postponed!

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7th International NBIA Symposium in Lausanne postponed!

Postponed to fall 2021 due to the corona situation

Unfortunately, the 7th International NBIA Symposium will not take place from October 1-3, 2020 in Lausanne, Switzerland, and will be postponed to fall 2021. For three days, scientists and physicians from all over the world will be invited to share their work and develop new strategies. Learn about the latest NBIA research. Share your experiences in the treatment of NBIA and take part in discussions.

NBIA-Suisse is in charge of the organization together with the Friedrich Baur Institute. As soon as a new date has been set, we will announce it here.