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 very interesting presentations can be found on YouTube. German subtitles can be displayed using the YouTube subtitle function: https://www.youtube.com/playlist?list=PLmztLyM1oP1IkOUqvjSPMH_iwgWER8VZd
In order to be able to organize an NBIA family conference in Germany next year, the board of Hoffnungsbaum e.V. is urgently looking for support - please contact us!
Patricia Wood reports the following in the September NBIA DA newsletter: The event began 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 to best 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 meet them and ask questions. The clinical sessions included physicians from Houston and two physicians from Children's Hospital Torch.
Before the more intensive, topic-oriented sessions began on Friday, time was set aside for socializing. This included time for families with a newly diagnosed relative and for those attending the conference for the first time to find out 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 individuals and blood samples and dried blood spots from 102 individuals for the NBIA Biorepository at OHSU. Volunteers from the nursing community also generously donated blood and tissue to serve as part of a "control group" for future scientific studies. Allison Gregory, genetics counselor at OHSU, said, "Control samples are hard for us to get, especially skin samples, so we are very grateful to those who volunteered." 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 years later and use them when a new research question arises. We can also share anonymized samples with colleagues."
Image: NBIA DA
Friday was packed with sessions on general topics, followed by breakout sessions in the afternoon. Our disease-specific sessions were particularly popular, allowing families to share information, offer mutual support and exchange solutions to everyday problems.
The Friday events ended with a memorial service for those affected by NBIA 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 present were asked to say a few words about their loved ones.
Saturday morning was dedicated to the latest disease-specific research findings. Nineteen speakers talked about the four most important NBIA diseases: BPAN, PKAN, PLAN and MPAN. Most presentations were recorded for the public unless the researcher had information that could not yet be published.
The rest of Saturday was dedicated to fun. There was a picnic at the nearby Fire Truck Park, where lunch was eaten, games were played and the conference group photo was taken. The evening was spent partying until the music stopped at 11pm.
On Sunday morning, sessions for NBIA adults, siblings and caregivers were on the agenda. The conference concluded with an art project we created together, followed by a video and slideshow of conference highlights.
Abridged translation of the original article by Patricia Wood from the September NBIA DA newsletter: