2014 International Conference
8th International PRISMS Conference
"BUILDING BRIDGES OF HOPE"
Thursday, July 31st, 2014 – Sunday, August 3rd, 2014
The Hilton St. Louis at the Ballpark, St. Louis, MO
Keynote speaker: Brenda Finucane, MS, CGC, PRISMS PAB Member
“From Single Syndromes to Shared Pathways: The Evolution of Behavioral Research in Genetic Neurodevelopmental Disorders”
Online registration for the conference is now closed; however, there is space still available. On site registration will be available at the start of the conference.
PRISMS is hosting the 8th International Conference on Smith-Magenis Syndrome. Families and professionals will attend the conference from all over the world to spend a few days immersed in all things “SMS,” and most of all to celebrate those persons in our lives with SMS. This is a time to share, give and receive support and learn new information about SMS, and make lifelong friends. To preview the conference agenda, click on the following link - Conference 2014 Agenda.
Hilton St. Louis at the Ballpark Hotel Information
The hotel is full. Rooms may be available at nearby hotels.
The conference will be held at the Hilton St. Louis at the Ballpark Hotel, St. Louis, MO.
The conference will begin with a "Meet and Greet" in the Parent Connect session on Thursday afternoon. First-time attendees will be able to meet with our "veteran" families, and our returning attendees will be able to reconnect with friends. Conference check-in will begin in the later afternoon, followed by a welcome reception, complete with a DJ, so bring your dancing shoes! Then we will spend the next two and a half days in the conference sessions; learning and sharing, and connecting. Don’t forget about our fantastic Silent Auction, which will be running during the conference. We hope to see you at the conference!
Conference committee: Pat Brown, Nancy Cordrey, Shannon Jantzi, Nina Kelly, Margaret Miller, Amy Pereira
Schedule of Events
You can see the complete schedule of events and biographies of the speakers on the PRISMS website and registration page as the agenda is finalized. This is a brief overview, mainly to serve as a timeline of events. Please note: the schedule is subject to change.
Thursday, July 31st, 2014
|2:00pm - 4:00pm||Parent Connect|
|2:45pm – 4:45pm||"First Steps: Navigating the PRISMS Conference and Finding Support Along the Way" (for first or second-time attendees only)|
|4:00pm||Conference check-in and registration begins|
|4:00pm||Childcare check-in begins|
|5:00pm - 7:00pm||Welcome reception with light hors d'oeuvres, (non-alcoholic drinks)|
Friday, August 1st, 2012
|7:00am - 8:00am||Continental breakfast & silent auction opens|
|7:45am||Corporate Kids childcare opens|
|8:00am - 5:00pm||Conference sessions, (lunch break included)|
|7:30pm - 9:00pm||Evening Session: Sharing & Caring, (free childcare is included for this session)|
Saturday, August 2nd, 2012
|7:00am - 8:00am||Continental breakfast & silent auction opens|
|7:45am||Corporate Kids childcare opens|
|8:00am - 5:00pm||Conference sessions, (lunch break included)|
Sunday, August 3rd, 2012
|8:00am - 11:00am||Breakfast and conference sessions continue|
All Childcare is full
This conference is intended for parents and professionals. If you are unable to make local arrangements for childcare, PRISMS is offering childcare through an outside agency, Corporate Kids. Corporate Kids will provide childcare for SMS children and their siblings, between the ages of 4-18 years old.
Corporate Kids Events provides the ultimate childcare and entertainment for events worldwide. Their time tested, ability specific activities are always fun and enriching, while keeping safety as a priority. CKE management has organized and managed customized camps and childcare programs for over 17 years. Their combined passion for children, education, art and recreation enables them to provide care & support. Corporate Kids utilizes secure sign-in and out procedures, digital photo security system and ID tags, so parents can enjoy their time at the conference.
This year's camp will provide a highly structured environment and a 1 staff to 2 children ratio. All staff will be experienced childcare professionals with experience working with special needs children. Daily activities will be scheduled based on your child's particular needs and comfort. Upon completion of your childcare registration form a representative of Corporate Kids Events will contact you to review your child's needs and answer any questions you may have in regards to the upcoming program.
The subsidized price of $150 per child (for two days) does NOT include the child's conference registration fee of $100, ($75 for SMS child). Childcare will be available on a first come, first served basis and space is limited. Registrations for Corporate Kids must be made before July 5, 2014; on-site registration will not be available. Use the link below to register your child for childcare. Childcare is during the sessions, totaling 18 hours of childcare for each participant. Siblings are welcome in childcare.
Special Event for our SMS adults, (ages 16 and up) - The PRISMS Den is full
This conference we are offering The PRISMS Den, for our SMS adult attendees, ages 16 and up. The PRISMS Den will take place on Friday, August 1st and Saturday, August 2nd, from 1:00pm – 5:00pm. Corporate Kids will also be providing 1:2 supervision for The PRISMS Den. The Arc of St. Louis will also be participating in The PRISMS Den and will provide fun, engaging activities as well. The PRISMS Den will be geared towards our adults and include activities such as:
- Nintendo WiiXbox Video Game Contest
- Music Time (instrument play)
- Craft Stations
First Steps Childcare - childcare for this session is full
Sharing & Caring Childcare - childcare for this session is full
Q. What can I expect if I attend the PRISMS “Building Bridges of Hope” Conference?
Each conference, attendees from all over the world gather to listen and participate in presentations from our expert speakers, discuss concerns and issues, and meet other families. Attendees learn from educators, researchers and medical professionals, and each other. They strive to better understand their children and what they can do to help them. They gain knowledge, perspective and hope. And of course, they also have a lot of fun meeting new friends and catching up with old ones.
Q. Who may attend the conference?
Everyone is invited to attend the conference. This includes parents, their children, extended relatives, friends and professionals. Many siblings also look forward to attending conferences, especially this year when we will have 2 sessions for siblings only. You do not need to be a member to attend, however, current members are offered a reduced rate.
Q. Will childcare be provided?
Yes, childcare is available for children from 4-18 years old and will be provided by Corporate Kids. The childcare is for children with SMS and their siblings. Space is limited, so please reserve your child’s spot early. See the info and link under the childcare heading. A 1:2 ratio is provided in the childcare for added support and security.
Q. Is there any activity for the adults with SMS who cannot or do not want to be in the childcare room?
Yes. We will be offering The PRISMS Den, for young adults and adults with SMS, (ages 16 and up), on Friday and Saturday, from 1:00pm – 5:00pm. Specific activities, geared towards the older individual, will be offered. Corporate Kids and The Arc of St. Louis will also staff this session. Please see the heading above, Special Event for our SMS Adults, (ages 16 and up), for more information,cost and registration.
Q. How old are the children in childcare?
There are children of all ages - from 4 to 18, in the childcare rooms. There are both typically developing children and children with Smith-Magenis Syndrome. There will be three rooms used for childcare, including a “quiet room.” Siblings are very welcome in the childcare and are often very helpful with their SMS sibs! Infants and very young babies are usually with their parents in the sessions, or the parents take turns attending sessions and taking care of the baby, (ages 4-18 in the childcare). Many times, families bring a relative or respite/caregiver person to help care for the child. Please note that we cannot and do not provide one-on-one childcare. If a child needs to be closely monitored, he/she will come into the sessions with the parents or stay with their relative or caregiver. Of course, they are always welcome in the childcare room with their caregiver.
Q. What is included in the price of registration?
PRISMS generously subsidizes the conference, along with the help of our conference sponsors. Each family is responsible for the cost of their hotel room at the Hilton St. Louis at the Ballpark hotel. It is not a part of registration. The registration fee includes five meals and a reception: reception Thursday evening, continental breakfast each day, (3), and lunch on Friday and Saturday. The fee also covers the cost of the facility for our sessions, childcare and related supplies, printed materials, and speaker costs. The registration fees for the conference are kept at the lowest possible cost and it is our desire to make it financially possible for as many families to attend the conference. Parent volunteers staff the conference committee. The committee has generously donated their time the past 20 months to plan and organize the conference.
Q. Does PRISMS offer scholarships to help cover conference costs?
Yes, PRISMS has a limited amount of financial assistance to help defer conference costs. Please contact PRISMS for a financial assistance form. Consideration is given to first-time attendees. We do encourage families to also seek funding through local resources such as; Developmental Disabilities Councils, The Shriners, Knights of Columbus, Lions Club International, Salvation Army.
New information!You may also seek funding through your school district, see the article Acquiring Funding for the PRISMS Conference for more information.
Financial aid applications are due by June 1st, 2014.
Q. What topics are included in the sessions?
The conference schedule will be continually updated on the registration website, so please continue to check. The conference will include sessions on:
|Behavior supports||Assistive technology|
|Adult transition issues & adult life||Pharmacological treatment of SMS|
|Sibling workshops, (for sibs only!)||Genetics 101|
|Guardianship & special needs trusts||Sleep & SMS|
|Dietary alternatives||Advocacy & wellness|
|International research updates||Education supports|
|Medical management of SMS||Puberty/sexuality|
|Sharing & caring||Positive Exposure, (Rick Guidotti)|
|And much more!|
Q. How do I register for the conference?
Q. What are the conference registration fees?
|Registration Fees||Up to 7/5/14||After 7/5/14|
|Adult (15 & up)||$200||$250|
|Child (14 & under)||$100||$125|
|Professional in training||$225||$275|
Q. Do I have to stay at the same hotel as the conference?
We strongly encourage all attendees to stay at Hilton St. Louis at the Ballpark to ensure the experience of camaraderie and fellowship with other attendees. Being together at the same hotel is so important and lends itself to the very purpose of our conference. Families spend these few days together and connect in a way that is life-long and supportive. Most people secure their hotel room first. We encourage you to do this early, as the hotel may be completely booked if you wait until the last minute. Remember, the early-bird rate deadline for the hotel, conference and childcare is JULY 5th, 2014. We encourage you to make your accommodations as soon as possible. If you are planning to travel by airplane, airline costs are going up, so book early!
Q. If I am unable to attend the full conference, can I pay a reduced registration fee?
No. PRISMS cannot prorate registration fees for days not attended. The registration fee remains the same whether you attend the conference for one, two, or three days.
Q. May I receive a refund if I am unable to attend the conference?
Under most circumstances, there will be no refund. If the conditions are extremely serious, feel free to contact the office to discuss the issue.
Q. Do I register and pay for my infant/toddler that I am bringing to the conference?
If your infant/toddler will NOT be going to daycare and/or will NOT be eating food provided at the conference, it is not necessary to register or pay for them to attend. However, if they go just once to daycare or eat one meal, then you are expected to pay for them to attend. You are welcome to bring your infant with you to the sessions; however, please respect others in the group by taking your infant out if he or she is causing a distraction.
Q. A family member/caregiver is coming to help with our child(ren). Does he/she pay the registration fee?
Does she plan to join us for meals? Yes, they pay.
Does she want to sit in on one session? Yes, they pay.
Will she join us for the reception on Thursday evening? Yes, they pay.
Do they want to socialize with other families in the conference setting? Yes, they pay.
Q. I am a teacher/therapist/professional that works with a child with Smith-Magenis Syndrome and I would like to attend the conference. What is my fee?
All professionals are expected to pay the full registration fee of $275.
Q. If I am not a current PRISMS member, or have not paid 2014 dues, do I pay a different registration fee?
Yes. If you are not a current 2014 PRISMS member, you will be charged $35 per family, or $55 per professional, due at conference check-in. Remember, we are a small, non-profit organization that relies on dues to keep programs, like the conference, viable. Thank you for your support!
Q. Will I be able to talk to doctors and specialists about my child/child’s condition?
Many of our speakers are professionals in their field and very willing to chat with you about your child and discuss general aspects of current research. But, please remember that this is not a clinical setting and they cannot dispense individual medical care. We will have Q&A with many of our speakers and we hope they can address many questions in a broad setting.
Q. Will you be having the Silent Auction?
Yes. We will be having our successful Silent Auction again, and are asking for Silent Auction donations. Your help is greatly needed. Please let us know what you've obtained or can obtain for the auction so we can put it on our list.
Q. Will there be a hospitality suite for families to socialize in the evening?
Yes. PRISMS will provide a hospitality suite/meeting room for the conference attendees on Thursday, Friday and Saturday from 7:00pm – 10:00pm. Snacks are welcome in the Hospitality Suite! You will be able to view fireworks from the suite on Friday evening, August 1, after the Cardinals ballgame.
Q. Who do I contact with additional questions?
Hilton St. Louis at the Ballpark is 20 minutes from Lambert -St. Louis International Airport (STL). There is not a free shuttle from the airport but Go Best Express Airport Shuttle offers discounted rates.
How to make reservations:
A special convention rate has been negotiated on PRISMS behalf. Reservations MUST be made online to receive the discounted rate before 11:59pm, July 20th, 2014. Walk-ups will not be eligible for convention rate, and standard rates will apply. Please go to Go Best Express website and begin your reservation to reserve a seat. The discounted convention rate of $18 one way or $34 round trip per person is offered. Credit cards are required and charged at the time of reservation.
If you are planning to drive to the hotel, there is self-parking across the street from the hotel for a rate of $10/day. Valet parking at the hotel is $16/day.
Hilton St. Louis at the Ballpark Hotel: Be sure to use the website link below to reserve a room at the conference hotel and receive the PRISMS discounted rate of $129.00 single/double per night, plus applicable taxes. Make your reservations prior to July 5, 2014. After that date, the discounted rate will not be available. To book a guest room, please click on the hotlink below or call 1-877-845-7354.
Hilton St. Louis at the Ballpark Hotel is a true destination hotel. Situated in the heart of downtown St. Louis, MO, and only 20 minutes from Lambert-St. Louis International Airport (STL). This central St. Louis, MO, hotel is within 100 yards of Busch Stadium, and footsteps from the iconic St. Louis Gateway Arch. Experience stunning views of the infield at Busch Stadium and the Gateway Arch from a guest room.
- Imo's Pizzeria
- Market Street Bistro and Bar
- Mike Shannon's
- Three Sixty Rooftop Bar
- Yo My Goodness
The Hilton St. Louis at the Ballpark Hotel is located near major attractions. Some of those attractions are:
St Louis Attractions - http://explorestlouis.com
There will be a Cardinals game at Busch Stadium on Friday, August 1, at 7:15 pm. For those interested, tickets are available at http://www.ticketnetwork.com.
Within 15 minutes of the Hilton St. Louis at the Ballpark
- Anheuser Busch Brewery Tours
- Busch Stadium – Home of the St. Louis Cardinals
- Gateway Arch Monument (includes the Museum of Westward Expansion)
- Citygarden (urban park and sculpture garden)
- City Museum (interactive museum and aquarium)
- The Loop (6 block specialty shopping/dining/entertainment)
- Old Courthouse
- Forest Park
- St. Louis Art Museum
- Missouri History Museum
- St. Louis Science Center/Planetarium
- St. Louis Zoo
- Missouri Botanical Garden
- The Muny (America’s oldest and largest outdoor theater)
- The Contemporary Art Museum of St. Louis
Within 30 minutes of the Hilton St. Louis at the Ballpark
- Aquaport Water Park
- American Kennel Club Museum of the Dog
- Laumeier Sculpture Park
- Museum of Transportation
- Faust Park (Home to the St Louis Carousel and Butterfly House)
- Frank Lloyd Wright House
- World Bird Sanctuary
- The Magic House (St. Louis' Children’s Museum)
Within 45 minutes of the Hilton St. Louis at the Ballpark