Navigating the Future (2017)

9th International

Dup15q Alliance

Family Conference:

Navigating the Future (2017)

July 24 - 26, 2017
Crowne Plaza Redondo Beach and Marina
300 N. Harbor Drive, Redondo Beach, CA

Plans are well underway for Dup15q Alliance's 2017 Family Conference: Navigating the Future!

Why should I attend?

Once every two years, Dup15q Alliance hosts an international family conference. Sessions will be held on the latest research, treatment and therapies for those with dup15q syndrome, with views from clinicians, providers and parents. We also hope to foster a sense of camaraderie and understanding. Many families feel that this is the one time when they don't have to explain their child and have a chance to meet other parents in similar situations.

While we have some information currently available for you to start planning, please check this website occasionally. We will continue to add information as we confirm the details.

Please click here and let us know if you are planning on coming to the 2017 Family Conference and to help us with some further planning!

Registration

Registration costs:

Non-Dup15q Alliance Member (ages 13 and older): $200
Adults (Dup15q Alliance member-13 and older):        $150
Child (Under 13):                                                                              $100
Dup15q individual (all ages):                                                     $Free
Under 2 years old:                                                                            $Free
Price includes:
                                     2 lunches (Monday and Tuesday),
                                     1 dinner (Monday night),
                                     Water park (Seaside Lagoon) admission (Tuesday night)
 
Meals only*:                                                                                        $120
*this option only available if you are bringing a childcare provider that will not attend presentations and DOES include the Seaside Lagoon Tuesday night.
 

If you would like to download the registration form, click here.

Conference Hotel

Online reservations; (USE THE LINK BELOW)

We have negotiated a rate of $197 per night with the Crowne Plaza Redondo Beach, where the conference will be held check-in on July 23rd and check out on July 26th.

It is extremely important that you book through our link above in order to receive the discounted rate. Dup15q Alliance had to guarantee a certain number of hotel rooms and if we do not have enough participates booking through our link, we will have to pay $15,000 for meeting space rental. We want to keep the registration as low as possible, so booking your hotel through our link is one way to make that happen.

On-line link:  DUP 15q Alliance 9th Conference

  1. Enter information such as check-in date, Check-out date, # of Adult, # of Children, # of room etc. (e.g., July-23rd-2017-July-26th-2017), 
  2. Click View Rates (You do not have to enter a group code.)
  3. Your room block DUP 15q Alliance 9th Conference  will appear and from there you can proceed to make your reservation.
  4. *the room rate should be $197.00, if you have selected dates outside of the conference dates, this amount may be different and you will need to contact the Reservations Department at the Hotel.  

Phone Reservation;

  1. Reservations Department at 310-318-8888 or 800-368-9760 
  2. Ask for the rate 
    1. by name,DUP 15q Alliance 9th Conference or 
    2. group code "DQL"

Parking: An additional Self-parking rate of $18 and valet parking of $31 will apply.

Cancellation: Individual reservation must be cancelled by 6:00PM 24 hours prior the day of arrival.

Extended hotel stay

Our room rate is only guaranteed  from check-in Sunday, July 23rd and check-out July 26th, if you anticipate extending your stay at the hotel please use the hotel reservation link and put in your desired dates and then contact Shannon or Josie at the Crowne Plaza to see if the conference rate would be extended, you will need a reservation number PRIOR to contacting them. 

Transportation and Parking

LAX is there The Crowne Plaza reduced their daily parking rate to $18 per day for Dup15q Conference attendees.  If you do not plan to stay at the conference hotel, the hotel will charge a daily parking rate.

The hotel has an airport shuttle from LAX for a fee ($).  This shuttle needs to be booked in advance.  Click here to book.  Use the code "Crown" to receive the hotel's discounted rate.  

Any questions please contact the hotel directly for this service.  This is not included in your registration or hotel fees. 

Conference Materials:

This year we will not be creating printed binders ahead of the conference, due to changes of speakers slides last minute.  A schedule including the speakers and symposium overview will be available prior to the conference here for download and daily printed handouts will be available.  

Conference videos

Thanks to Monica and Noah Kadner’s  company (parents Dylan-dup15q), all presentations will be videoed and be available on the conference website after the conclusion of the conference.  

Research Opportunities

Our 2017 conference will have several opportunities for families to get involved in dup15q syndrome research. Dr. Shafali Jeste’s laboratory from UCLA will again be collecting EEG data, performing cognitive assessments as well as motor assessments.

The Geisinger Research group will have an exhibit to discuss research studies that they are recruiting for. 

Schedule

July 23rd –July 26th at the Redondo Beach Crowne Plaza is where all the fun will take place.

On Sunday evening, July 23rd, conference organizers will host an information session for new families and first-time attendees. While it is not mandatory, helpful tips and the conference schedule will be discussed.

The full schedule can be found here, and is always subject to change.

Stay tuned, but note that many of our advisors, clinical partners, scientists and parents will be presenting the latest findings on dup15q syndrome.

Conference T-Shirts

This year we are enabling you to pre-order your conference t-shirts when you register for the Conference, click here to register and to order your conference t-shirts. Shirts that have been pre-ordered will be given out at the Registration table. There will only be a small number of shirts available for purchase at the conference. These typically sell out very quickly.

Children in sessions

In general, you and those around you will gain the most from the symposiums, presentations and discussions when you are able to focus on the speaker without distraction. For that reason, we do not suggest bringing your child(ren) into sessions as sometimes this can be disruptive to our presenters and others who are attending the presentations. In cases where you need to bring your child, please be respectful of others in attendance. You are welcome to leave during the sessions to switch off with family members/friends who are helping to care for your child(ren).

Childcare

Corporate Kids childcare will be onsite Monday 12pm-5pm, for a flat rate of $50 (paid in advance, in order to get count of children and their ages so we can make sure we have proper ratio of staff).   This service is available for all children in attendance.

You can register to use child care on the Conference registration form or here.

TOILETING/DIAPERS

0-4 ages, diapering allowed

4+, caregiver will be notified by phone/text 

Family Break Room:

We will have a space for parents and caregivers with their dupers to use during the conference. A responsible adult must be present with your child(ren) at all times. This is not a drop-off room, your child must be accompanied at all times while using this space!

Other childcare options:

Many families choose to bring other family members or their own childcare provider to watch over their children.  For these support people, the “meals only” registration that can be used.  

In addition: There are a couple of local resources we have found that may help you with locating childcare. These companies are not affiliated with Dup15q Alliance. We provide these details only as information. Each family needs to decide what is best for their child(ren).

  • Kids Nite Out can provide babysitters on-site, as well as rent necessary child-friendly equipment. Details are available on their website - www.kidsniteout.com. They do have specific sitters that are trained and have experience caring for kids with special needs. Ask them for details
  • You can also pay for a one-month membership to Care.com. This would allow you to select a local babysitter with your own specific requirements.

Sponsor a Part of the Conference!

Hosting our family conference costs tens of thousands of dollars. Only a small percentage of that is covered by your registration costs. For the rest, we fundraise.  View our sponsorship packet here.

Maybe you are willing to make a donation or maybe there is a business in your community that you'd be willing to ask? Every sponsorship makes a real difference. Together we can create a better tomorrow for all those affected by dup15q syndrome! Online sponsorships via credit card can be made here.

Financial Assistance

It is important for dup15q families, clinicians and researchers to come together in one location to share, support, socialize and learn together. However, costs associated with travel and attending a the Dup15q Alliance Family Conference can seem daunting to some of our families.

If you are even a little bit interested in attending the conference, please start planning now! There are many ways to receive assistance with attendance costs.

  1. Hold a Dup15q Alliance Fundraiser, to earn free conference registration(s) and night(s) in the hotel!
  2. Start thinking of organizations in your local community that might be able to help with financial donations.
  3. Scholarships:
    1. A generous conference travel awards has already been awarded by the Roz Financial Group.
    2. An additional conference travel award has been offered by the Kross Family in memory of Michael Kross.  Apply here.
    3. Dup15q Alliance has limited scholarship funds available for member families. Scholarship applications must be received by May 1st, 2017 to be considered. See details here.