Family conference ReUnites NBIA community in-person
Our first in-person family conference since the pandemic lived up to the gathering’s theme, “ReUnited.” Families who have been coming for years were excited to see each other again, while we welcomed 27 new families to our 12th International NBIA Family Conference in May.
In all, 70 families from four countries traveled to Houston, for a total of just under 200 participants, including 49 NBIA individuals.
The event got underway May 18 with clinical meetings for BPAN, PKAN and PLAN. A kickoff dinner followed that night. A panel of experts answered pre-submitted questions at each of the clinical sessions and discussed how best to take care of affected individuals. MPAN families had their clinical meeting on Friday morning. Many of these experts were present throughout the conference so families had opportunities to get to know them and ask questions.
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| Panels of experts answered questions at the BPAN, PKAN, and PLAN clinical sessions on Thursday. |
The clinical meetings included local Houston clinicians and two clinicians from Children’s Hospital of Philadelphia (CHOP) who see NBIA patients in their practice. The two CHOP physicians spoke at our Friday sessions.
Social time was built into the calendar before more intensive issue-oriented sessions started on Friday, including time for families with a newly diagnosed loved one and those attending for the first time to hear about what they should expect during the weekend.
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| Blood samples, dried blood spots, and skin biopsies were collected at the conference for the NBIA biorepository at OHSU. |
Also on Thursday and Friday, the NBIAcure team from the Oregon Health & Science University collected a record number of biological samples for study from NBIA individuals, unaffected carriers and healthy individuals. These samples included skin biopsies from 35 individuals and blood samples and dried blood spots from 102 people for the NBIA biorepository at OHSU. Care room volunteers also generously donated blood and tissue to serve as part of a “control group” for future scientific studies.
Allison Gregory, a genetics counselor at OHSU, said, “Control samples are difficult for us to get, especially for skin, so we really appreciated those who stepped up to do this.” She added: “All the samples will be housed in our NBIA biorepository to be used for both current and future experiments. The importance of processing and storing samples like these is that we can pull them and use them years later, when a new research question comes up. Similarly, we can share de-identified samples with collaborators.”
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Friday was packed with sessions covering topics for everyone in our main ballroom, followed by afternoon breakout sessions. A popular session was our disease-specific sharing sessions for the families to exchange information, show support and offer solutions to everyday issues.
Friday’s sessions ended with a memorial tribute to NBIA individuals no longer with us, but never forgotten. A violinist played as volunteers carried a rose and announced the name of an individual we have lost to NBIA. They placed the rose on a table decorated with candles and pictures of those no longer with us. Surviving family members in attendance were invited to say a few words about their loved ones.
Saturday morning featured disease-specific research updates. Nineteen speakers addressed 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 could not yet be disclosed. You can find the talks at our conference website link.
We also awarded our first Center of Excellence designation to Oregon Health & Science University. In addition, I announced my decision to step down as president effective Sept. 30. Amber Denton, a board member and chair of our development committee, will be our next president.
The rest of Saturday was devoted to fun. We picnicked at the nearby Fire Truck Park where we enjoyed lunch and games and took our conference group photo. That evening, we enjoyed a dessert social with ice cream sundaes, more sweets and dancing. We partied until the music stopped at 11.
Sunday morning featured sessions for NBIA adults, siblings and caregivers. The conference closed with an art project we created together, followed by a video and slideshow of conference highlights.
In all, the conference had 41 speakers. You can find a link for recorded sessions, along with descriptions here. The closing ceremony is included.
We are grateful to our Family Conference Committee led by co-chairs Amber Denton and Jennifer Sanchez, who did an outstanding job, along with committee volunteers and members of the Development Committee.
Especially noteworthy was the care room, which visitors deemed the most entertaining one ever. It included a space camp put on by Lone Star College Occupational Therapy students and Story Time with Princess Belle. Children took advantage of having a photo op with Cinderella, and an adaptive dance team performed. A “Just Dance” party followed. These activities set a high bar for care rooms at future conferences.
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| Amber Denton and Jennifer Sanchez, conference co-chairs, outside the care room with its space camp theme. |
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| Story Time with Princess Belle was a big hit in the care room. |
None of this would have been possible without our conference sponsors who donated $67,380 to help us manage increasingly expensive costs. CoA Therapeutics was our Elite Sponsor. Our Titanium Sponsor was Sydney’s Song & BPAN Tribe, which is made up of Amber Denton’s family and other Houston NBIA families. Another 15 sponsors provided support, and all are acknowledged on pg. 26.
Thanks also to the donors who supported our scholarship fund to the tune of $8,856. This covered hotel rooms and registrations for nine families, making it possible for them to attend, including several from other countries.
Additional revenue of $29,789 came from registrations, merchandise sales and silent auction and raffle items contributed by our families.
Conference expenses of $120,226 exceeded revenue by $12,838. We made up the difference with general fund monies earmarked for family support.
We are already looking ahead to 2025 and will keep you informed when a date and site are chosen for our next family conference.
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Conference Articles
2023 Family Conference Sessions
Many of the sessions at the 2023 NBIA Family Conference were video recorded. Click on the button below to view a playlist of the available videos on our YouTube channel. You may select the videos you would like to watch from the playlist.
Description of Recorded Sessions
2023 Family Conference Closing Ceremony Video
2023 Family Conference Photo Montage Video
2023 Family Conference Photo Galleries
See photos from the conference sessions, events, and activities:
View family photos, and group photos by NBIA disorder, State and Country:
We are grateful for our sponsors.
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| TITANIUM SPONSOR | ||
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PLATINUM SPONSORS |
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Chiesi Global Rare Diseases
INADcure Foundation
Space City Dawg Pound with Monica & Christian Mitchell
GOLD SPONSORS
ALJ Lindsey, LLC
Nicols Crane Rental
Robert Stephen Consulting, LLC
SILVER SPONSORS
Calix Holdings, LLC
Suzanne & Norman Cohn
Mark & Martha Nell Richards
Murdock Family
Pyramid Logistics
COPPER SPONSORS
Burke Family
Chico's Best
CW Industries
Victoria Stapleton
