Videos of the NBIA Family Conference 2023 in the USA online

For the first time since the pandemic, the NBIA Disorders Association hosted the 12th NBIA International Family Conference in the United States. 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. More videos and especially recordings of some very interesting lectures can be found on YouTube. With YouTube's subtitle function, German subtitles can be displayed: https://www.youtube.com/playlist?list=PLmztLyM1oP1IkOUqvjSPMH_iwgWER8VZd

In order to be able to organize an NBIA family conference in Germany as early as next year, the board of Hoffnungsbaum e.V. urgent support – please contact us!

Patricia Wood, among others, reports the following in the NBIA DA's September newsletter: The event kicked off on May 18 with clinical sessions for BPAN, PKAN, and PLAN. An opening dinner followed the same evening. A panel of experts answered pre-submitted questions in each of the clinical sessions and discussed how best to care for those affected. The MPAN families had their clinical session on Friday morning. Many of these experts were present throughout the conference, giving families the opportunity to get to know them and ask questions. The clinical sessions were attended by doctors from Houston and two doctors from Children's Hospital Torch.

Before the more intense, topic-oriented sessions began on Friday, time was set aside for a social gathering. This included time for families with a newly diagnosed loved one and for those attending the conference for the first time to learn what to expect during the weekend.

Also on Thursday and Friday, Oregon Health & Science University's NBIAcure team collected a record number of biological samples from NBIA patients, unaffected carriers, and healthy individuals for testing. These samples included skin biopsies from 35 people, as well as blood samples and dried blood stains from 102 people for the NBIA biorepository at OHSU. Volunteers from the care environment also generously donated blood and tissue to serve as part of a "control group" for future scientific studies. Allison Gregory, consultant for genetics at OHSU, said, "Control samples are hard for us to get, especially skin samples, so we're very grateful to those who made themselves available." She added: "All samples will be stored in our NBIA biorepository and used for current and future experiments. The importance of processing and storing samples like these is that we can take them out and use them years later when a new research question arises. We can also share anonymized samples with colleagues."

Friday was packed with sessions on general topics, followed by breakout sessions in the afternoon. Particularly popular were our disease-specific sessions, where families were able to share information, offer support to each other, and share solutions to everyday problems.

Friday's events ended with a memorial service for NBIA survivors who are no longer with us, but will never be forgotten. A violinist played, while volunteers carried a rose and called the name of a person we lost to NBIA. They placed the rose on a table decorated with candles and pictures of the deceased. The bereaved families present were asked to say a few words about their loved ones.

Saturday morning was dedicated to the latest disease-specific research results. Nineteen speakers talked about the four main NBIA disorders: BPAN, PKAN, PLAN and MPAN. Most of the talks were recorded for the public unless the researcher had information that was not yet allowed to be published.

The rest of Saturday was dedicated to fun. There was a picnic at the nearby Fire Truck Park, where we also had lunch, played games and took the conference group photo. In the evening they partied until the music stopped at 11 pm.

On Sunday morning, sessions were on the agenda for NBIA adults, siblings, and caregivers. The conference concluded with an art project designed by us, followed by a video and a slide show with the highlights of the conference.

Abridged 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