Family Support - NBIA Disorders Association

2023 conference logo

12th International NBIA Disorders Association Family Conference

CONFERENCE REGISTRATION IS NOW CLOSED!

Please contact Patricia Wood at pwood@nbiadisorders.org with any questions.

Please join us for the 12th International NBIA Disorders Association Family Conference May 18 to May 21, 2023, in Houston, Texas.

The nation’s fourth-largest city, Houston, is the biggest city ever to host our family conference. It will be at the Hilton Houston Post Oak by the Galleria, 2001 Post Oak Blvd. The hotel is nicely situated, with easy access to airports, shopping and restaurants.

Our family conference is open to all NBIA families, members of the medical and research community, and anyone who is interested in learning more about NBIA disorders.

We will be holding disease-specific pre-conference clinical sessions on Thursday during the day for PKAN, BPAN and PLAN families. MPAN and FAHN clinical sessions will be on Friday. NBIA families will have the opportunity to ask clinical questions via a survey that will be sent to them after they register. These questions will be addressed in the clinical session for that disorder.

Also on Thursday in the late afternoon, we will be holding a session for newly diagnosed families and those that have never attended an in-person family conference to share and learn what to expect from the coming weekend.

Our kick-off dinner on Thursday evening from 6:00 – 9:00 pm will bring everyone together for a “Getting to Know You Activity” on this first evening together.

Attendees at our sessions on Friday, Saturday and Sunday will hear the latest research news and possible therapies for NBIA individuals. We will have general sessions for all attendees along with breakout sessions on Friday afternoon, which will allow attendees to choose sessions of interest that cover a variety of meaningful topics relevant to NBIA disorders.

Our family picnic on Saturday afternoon is at Fire Truck Park. It is about 4 miles and a 9-minute drive from our hotel. We will have transportation for those who do not have a car. We will take a group photo wearing our conference t-shirts and play games at this fun social time for our families.

On Saturday evening we will have a dessert social with our Silent Auction and end the night with a DJ and dancing. On Sunday morning we will have sessions for NBIA adult individuals, siblings and caregivers, along with other general sessions, and then conclude with our closing ceremony sharing video highlights and a community art activity inspired by our conference theme, along with a special song performed by a BPAN family who have a band called Mystic Roots.

Conference Registration

Conference Program

Fees include materials, dinner on Thursday evening, 2 lunches, coffee and tea breaks, a Saturday night dessert social and child care during sessions.

$175 per person
No charge for NBIA individuals or children under 7 years old

REGISTRATION FORM

Hotel Reservations

2001 Post Oak Blvd.

Houston, Texas, 77056-4401, USA

+1 713-961-9300

The Hilton Houston Post Oak by the Galleria has created a special website for our group making it possible for participants to easily reserve a room. The cost is $139 a night (plus $23.63 per night in taxes) for either a king or queen room. There are 12 handicap-accessible rooms on a first come, first served basis with 5 having roll-in showers at the hotel. At this time there are only king handicap accessible rooms still available as the others have been booked by NBIA families.

Rooms can be reserved at our group rate for up to 3 days prior and 3 days after the conference if available. If the days you need are not showing on our dedicated website, you should call the hotel to handle your reservation. The cutoff date to reserve a room at the $139 rate is April 23, 2023. Please don’t delay in making your reservation, as we have a limited amount of rooms reserved at this price.

The room rate includes complimentary WIFI and discounted overnight self-parking at $10 per night. Each room includes a small refrigerator. The hotel has an outdoor pool, a 24-hour fitness center, 2 restaurants and a bar. A complimentary breakfast buffet is not included at this hotel so you will be on your own for this meal. There is a Whole Foods Grocery down the street from the hotel if you wish to purchase food to put in your room refrigerator.

The hotel is half a mile from the shops and restaurants at The Galleria – America’s fourth-largest mall – and three miles from Memorial Park and the Houston Arboretum and Nature Center. Downtown Houston is seven miles away.

Conference Care Room Information for Children, Teens and Adults

Care Room Information Form

There will be no on-site child care registration, so please be sure and register everyone who will be in the care room on any day by filling out the Care Room Information Form and sending it in as part of your conference registration.

Hours*

Thursday, May 18 (pre-conference)

8:15 am – 10:15 am Only PKAN families attending clinical session

11:15 am – 1:15 pm Only BPAN families attending clinical session

2:15 pm – 4:15 pm Only PLAN families attending clinical session

Conference Days

Friday, May 19 8:00 am - 12:15 pm & 12:45 pm - 6:15 pm

Saturday, May 20 8:30 am - 12:15 pm

Sunday, May 21 8:45 am - 11:30 am

*Hours care room is open may vary slightly if the conference schedule changes

The care room is nearby the ballroom where general sessions will be held. Those who cannot sit still and be silent must be in the care room during sessions. There is no age limit for those in the care room and all NBIA individuals are welcome. A liability waiver is required.

Those in the care room can look forward to participating in space-themed activities and fun games that will be designed for a variety of differing abilities. On Sunday, Partners In Dance will offer a short performance, followed by “Just Dance,” which is a dance video game in which the group follows along.

We will have TV/DVD available for movies. Please bring favorite movies to share, along with any favorite games or toys.

Volunteers and the nurses in the care room will not be responsible for tube feedings, diaper changes, suctioning or other medical procedures.

Those in the care room will be with their families for dinner on Thursday, Friday lunch, dessert social on Saturday evening, and for our community art project and music performance on Sunday morning as part of our closing ceremony.

If you have a family member that would like to sign up for a volunteer shift in the care room, please note their name and either their cell phone or email address so that we can contact and schedule them for a date and time slot. If you have someone who wishes to stay in the care room with the NBIA individual, please let us know that also.

Transportation

Flying

Houston Intercontinental Airport: 28 miles to the hotel

William P. Hobby Airport: 17 miles to the hotel

There is no hotel shuttle from either airport. A Taxi, Uber, or Lyft will cost approximately $40 – $75 depending on the time of day, availability, and how long you are willing to wait for pickup.

The light rail system’s METRORapid Silver Line runs along Post Oak Boulevard in dedicated lanes and has a stop about 350 feet from the entrance to the hotel. The metro has wheelchair accessibility with a fare of $1.25 for three hours. It goes to the Galleria and other places of interest, with service every 12 minutes. It is possible to transfer to a city bus that goes to the airport and other locations.

NBIA Conference Scholarships

We will be offering conference scholarships to help some who otherwise couldn't attend. For those wishing to contribute to our scholarship fund and help a NBIA family attend, you can do so here.

Depending on how many apply and how much our donors provide, we hope to help applicants by waiving registration fees and reducing their hotel costs. Other travel costs are not covered.

Scholarship Application

Applications must be received no later than March 15.

Medical Conference Tax Deduction Information

Conference Sponsors

ELITE SPONSOR

TITANIUM SPONSOR
AND
Thanks to our sponsors for helping to make this conference possible. To date we have CoA Therapeutics, Inc as an Elite sponsor, Sydney’s Song & BPAN Tribe as a Titanium sponsor, Chiesi Global Rare Diseases, INADcure Foundation and Space City Dawg Pound with Monica and Christian Mitchell are Platinum sponsors and Gold sponsors are ALJ Lindsey, LLC, Nichols Crane Rental and Robert Stephen Consulting, LLC. We also thank our Silver, Copper and Bronze sponsors.
We need conference sponsors to help us defray costs. We expect this conference to be our most expensive gathering ever. We strive to keep registration fees low, and sponsorships help make that possible.
If you know an individual or company that might be interested in sponsoring, please share our sponsorship letter and sponsorship information form with them.
We have a form and sponsorships for $10,000 and under here, with payment by credit card. Potential sponsors are welcome to contact Amber Denton by email at adenton@NBIAdisorders.org with any questions.

Sponsorship Opportunities

Sponsorship Letter

Sponsorship Submission Form

Family conference ReUnites NBIA community in-person

GroupPhotoL 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.

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.

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.”

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. Dance

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.

Reunited

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.

Amber Denton and Jennifer Sanchez, conference co-chairs, outside the care room with its space camp theme.

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.

CoA Logo

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.

Conference Articles

Keynote Speakers

BPAN Research Updates

NBIA Research Overview

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.

View Conference Sessions

Description of Recorded Sessions