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2015 Family Conference

8th Family Conference, May 28-31, 2015, Minneapolis, MN


NBIA Disorders Association’s 8th International Family Conference, May 28-31, Embassy Suites Minneapolis North, Brooklyn Center, MN

Please join us for the Eighth International NBIA Disorders Association Family Conference May 28-31, 2015 in Minneapolis, Minnesota. The conference is open to all NBIA families, friends, members of the medical community and anyone who is interested in learning more about NBIA.

We are planning a variety of stimulating topics and plenty of time to socialize. Our conference kicks off on Thursday, May 28, at 5:15 p.m. with registration, followed by a dinner at 6 and our “Getting To Know You” session. We’ve found that holding this session early on is a fruitful way to kick off the conference. Families learn about each other through this ice-breaker and feel comfortable engaging with others throughout the weekend.

Attendees at the sessions will hear the latest research news and possible therapies for NBIA. We will also focus on how to improve quality of life for both NBIA individuals and their families.

Our family picnic on Saturday afternoon will be a 12 minute walk from the hotel at a nearby community park.  On Saturday evening we will have a dessert social with our Silent Auction & drawing for a signed guitar, and a DJ and MC for entertainment. On Sunday morning we have an art and music therapy session where we will all create something together, as a community, and we will then conclude at noon with our traditional closing ceremony. 

Private family appointments with some members of our Scientific & Medical Advisory Board and other NBIA clinicians will be available on Wednesday, May 27 and Thursday, May 28. Please fill out the Appointment Questionnaire included with the registration packet and return to pwood@NBIAdisorders.org  as soon as possible if interested. Priority will be given to families attending the conference for the first time. You must be registered for the conference before receiving an appointment time.

See our Preliminary Family Conference Program for more details:
Conference Program


Conference Registration

Fees include materials, dinner on Thursday evening, 2 lunches, coffee breaks, a Saturday night dessert social and child care during sessions. A made-to-order breakfast is included with the price of the room.

  • $120 one person
  • $95 each additional family member in same household
  • No charge for NBIA individuals or children under 8 yrs old

Full payment and conference registration form must be received by April 17, 2015. Payment may be made by check or money order payable to NBIA Disorders Association, or by credit card on our website.

Register Online (and pay with credit card, debit card or PayPal account)


Mail Registration Form

NBIA Disorders Association
2082 Monaco Ct.
El Cajon, CA 92019-4235

Download Registration Form (and mail-in with payment by check)


Questions about Registration?
Phone: 619 588-2315
E-mail: info@NBIAdisorders.org


Appointments with Physician Experts

Our NBIA physician experts will be meeting with families starting May 27, for those who want individual or family appointments, and will continue into Thursday with preference given to first-time attendees. Appointments are limited so they will be made on a first-come, first-served basis to registered participants until full.

Because some of our doctors will be speaking and attending conference sessions, there will be no family appointments during the conference.

Please schedule your appointment early if you want to take advantage of this opportunity to meet with leading NBIA experts and discuss particular issues or treatment options. Click the button below to fill out and email completed appointment form to pwood@NBIAdisorders.org . You must be registered first before sending in appointment form.

Appointment Form (Microsoft Word format ".doc")


NBIA Family Scholarships

We will have a limited number of scholarships available to NBIA families who could not otherwise afford to attend. Amounts available will be dependent on the number of families requesting help and donations received. Preference will be given to first time attendees. 

Scholarship Application Form (Microsoft Word format ".doc")


Hotel Reservations

Embassy Suites Minneapolis North
6300 Earle Brown Drive,
Brooklyn Center, Minnesota  55430
Phone: 763-560-2700

A limited number of suites have been set aside for our conference. To reserve a room, you can call the hotel directly at 763-560-2700 and indicate you wish to book under the NBIA Disorders Association room block, or you can make a reservation online at a website set up especially for our group by simply clicking the button below.

The suite rate is $114 for up to 2 people and $10 for each additional person. There is no additional charge for children 17 and under,  or NBIA adults who have a g-tube and will not be consuming hotel food. The rate is applicable for three days before to three days after the official meeting dates (28-31), subject to space availability. The property is 100% non-smoking. Please contact Patty Wood at pwood@NBIAdisorders.org if you have any problems registering with the hotel and not being quoted the proper rate.

Suites have either one king bed or two queen beds and are a bit smaller than the suites we have enjoyed at past conferences.  Six people in a suite may be a bit crowded.  Each suite offers a TV in each room, a living area with a sofa bed, armchair and well-lit work table, wet bar, refrigerator, microwave, and coffeemaker. High-speed Internet access is available at no additional charge for our group.

A small number of rooms (both King and Queen suites) are accessible and will be available on a first come, first served basis. They must be requested at the time of booking. 

All reservations must be made by April 26 to be guaranteed our discounted rate.  Since there are a limited number of rooms available at this rate, it is possible our group rate will be filled before that date, so it is best not to wait too long to make your reservation.

The hotel offers an indoor heated swimming pool, whirlpool, and a Steakhouse Restaurant.

There is a free cooked-to-order breakfast each morning and snacks and complimentary cocktails at the Evening Reception.  The hotel has free on-site parking for guests.   Pets are not allowed. 

Hotel Reservations


Conference Child Care Information

Friday, May 29:  8:45am – 12:30pm & 1:15pm – 6:15 pm
Saturday, May 30:  8:30am – 12:15pm
Sunday, May 31:  8:30am – 11:30am

The care room is across the hall from the meeting room for easy parent access. Those who cannot sit still and 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.

We will have a TV/DVD available for movies. Please bring favorite movies to share, along with any favorite games or toys. We will also have some other outside entertainment for those in the care room, such as pet therapy on Friday. Volunteers in the care room will not be responsible for tube feedings, diaper changes or suctioning. A liability waiver will be required.

Those in the care room will be with their families during breakfast, lunch, dinner on Thursday evening, the dessert social and the closing ceremony. They may also join us for the art and music therapy session on Sunday if they wish.



The Embassy Suites Minneapolis North is serviced by the Minneapolis-St Paul International Airport which is 17 miles away.  Taxi Service to and from the airport will run approximately $60 - 75 each way.  You can also use Uber which is a little bit less expensive. Check out their website at https://www.uber.com/cities/minneapolis

Another much less expensive option is to use Minneapolis’s Light rail transit to downtown Minneapolis and then take a complimentary shuttle to the hotel.  Take the Metro Blue Line from the airport to the Target Field Station at 335 5th St. North which costs less than $3 per person and takes approximately 25 minutes.  It is handicap accessible and reduced fares are available for seniors, children and persons with disabilities. Children 5 and under ride free (limit 3) when accompanied by a paid fare. Directions on how to access the light rail at the airport: http://www.mspairport.com/GroundTransportation/light-rail-transit-service.aspx

Once you have been riding on the light rail for about 15 minutes or so, or when you pass the Lake Street/Midtown Station stop, you can call the front desk (763-560-2700) of the hotel and tell the front desk agent you are on the light rail and will want to be picked up shortly. Their complimentary shuttle will then leave the hotel and head towards the Target Field Station. You can wait at the station until the  shuttle with a large teal “E” arrives to take you to the conference hotel.

If you are arriving at a time when the shuttle is not available or is busy picking up other guests, you can take a taxi from the Target Field Station to the hotel for approximately $15 – 20.

For those who need a handicapped accessible van for a ride from the airport to the hotel, or from Target Field Station to the hotel, there are several available options.  You may also ask them about service during your stay at the hotel if needed.

Accessible Transportation Options



The hotel provides a complimentary shuttle for destinations during your stay within 5-7 miles of the hotel. Bicycling, bowling, hiking, fishing, a playground and golf course are all nearby attractions, as is a brewing company.

Hours the shuttle van is available are from 7 am to a last run at 10 pm.  You should call the Front Desk to make reservations, preferably in the morning if requesting service later that day. They have a 10 passenger van for most runs, but have said they will also have a 25 passenger bus available on Friday evening since we may have large numbers needing transportation for dinner or sightseeing during free time. Neither  the van or bus are handicap accessible.

There are two places the shuttle will go that are slightly beyond the 5-7 miles radius:

  • Downtown Minneapolis (approx. 8 miles) to Restaurant Row or to Target Field Station where you can catch the Light Rail to many sites in Minneapolis, including the Mall of America on the Blue Line.
  • Maple Grove  “The Shoppes at Arbor Lakes” –  an outdoor mall with dining and a multitude of shops.


Accessibility Guide for Minneapolis:



Helpful Information

There are two government rulings that help families write off expenses for medical conferences and might prove helpful :

  1. Families can potentially use pre-tax dollars from an FSA to cover many of the costs of attending the NBIA meeting, with a “Letter of Medical Necessity” from a treating provider.  It would be easy to make the argument in the letter that for an ultra-rare disorder, attending the conference is the best way to get medical information.  These rules are not plan-specific: they are straight from the IRS:

    Medical conference - Includes expenses for admission and transportation to a medical conference, if it relates to a chronic disease suffered by you, your spouse or your dependent and if the conference is primarily for and essential to the person in need of medical care. Reimbursement also includes transportation expenses to the city where the conference is held, plus local transportation to the conference. Most of the time at the conference must be spent attending sessions on medical information. Required documents: letter of medical necessity.

  2. If you don’t have a FSA, you can still write off some expenses from attending a family conference under these rules: Topic 502 - Medical and Dental Expenses Payments made for admission and transportation to a medical conference relating to a chronic disease that you, your spouse or your dependents have (if the costs are primarily for and essential to necessitated medical care). However, you may not deduct the costs for meals and lodging while attending the medical conference.



We are always looking for volunteers to help with conference planning and organizing. If you wish to be involved, please contact us at info@NBIAdisorders.org. We welcome your ideas and suggestions.