The National Ataxia Foundation

Annual Ataxia Conference
Orlando, FL
The Magic of a Cure

April 1-3, 2016

 

The Magic of a Cure

 

Quick Links

The National Ataxia Foundation (NAF) Board of Directors and the National Ataxia Foundation Southeast Region invite you to attend the 59th Annual Ataxia Conference (AAC). Please join us at the Caribe Royale in Orlando, FL to learn, share, network, have fun, and enjoy the sites.

The 2016 AAC will bring together the ataxia community to not only meet and learn from world-leading ataxia researchers and clinicians, but also to build new friendships and reunite with old friends. Come and be part of the largest ataxia gathering in the world!

 

Sponsors

The National Ataxia Foundation would like to thank the following Sponsors for their continued support.

Athena Diagnostic MetLife Center for Special Needs Planning
Ora Labs Biohaven
Thank You to Our Sponsors

 

2016 NAF Award Recipients

Congratulations to you all!

 Michael Cammer  Jane Jaffe
 Michael Cammer
(Video)
 Jane Jaffe
(Video)
 Charlotte DePew  Harry Orr PhD
 Charlotte DePew
(Video)
 Harry Orr PhD
(Video)


 

Conference Registration

The conference registration is available online starting November 4, 2015 and in the Winter 2015-2016 issue of Generations. Please fill out the registration form completely, including your travel information, as we need all the information to finalize plans. When registration opens, you are encouraged to register before February 12, 2016 to receive the discounted early registration rate. General registration rates apply after February 12, 2016. Registrations after March 25 will only be accepted on-site at the conference. (Additional “on-site” registration fee will apply) If you are bringing an attendant, please register together on the same registration form. Each person who is planning on attending daily sessions, the reception, or banquet needs to register. Event entry will be allowed only with properly registered name badges. The conference registration fee includes attendance at all the sessions, light appetizers at the Friday evening Meet & Greet Reception and a plated meal at the Saturday evening Banquet. Thanks to the hard work of the conference planning committee and hosting groups NAF did not have to raise registration fees this year!

Registration Fees

Before February 12th
NAF Member $125
Non Member $180

After February 12th
NAF Member $150
Non Member $205

After March 25th - On Site
NAF Member $200
Non Member $255

No refunds of registration fees for cancellations received after March 14th. Registration at the door is not recommended.

 

Member Registration Discount

Being a member of the National Ataxia Foundation has its benefits – one benefit is paying a lower registration fee for the Annual Ataxia Conference. If you are not currently a member of the Foundation or if your membership renewal is coming soon or if you are uncertain of your membership status, please consider this a great opportunity to contact the office at (763) 553-0020 or joan@ataxia.org. Visit www.ataxia.org to become a member or renew your membership online. This will prevent unnecessary extra fees or errors in your membership status when you register for the 2016 Annual Ataxia Conference. Thank you for taking the time to renew or become a member of the National Ataxia Foundation.  

 

Conference Deductions by attendees

http://www.irs.gov/pub/irs-irbs/irb00-19.pdf
Rev. Rul. 2000–24, page 963 (In part)

 

Medical expenses

Amounts paid by an individual for expenses of admission and transportation to a medical conference relating to the chronic disease of the individual’s dependent are deductible as medical expenses under section 213 of the Code (subject to the limitations of that section), if the costs are primarily for and essential to the medical care of the dependent. The cost of meals and lodging while attending the conference are not deductible as medical expenses under Code section 213.

 

Travel Grant Program

Because of the generosity of several donors, the National Ataxia Foundation is able to offer Travel Grants to help with a portion of the travel costs associated with attending the meeting. Adults or children with ataxia are eligible to apply for a travel grant. Individuals interested in the program are required to submit a Travel Grant application. Applications will be accepted until Jan. 15, 2016. Travel Grant applicants will be notified of the status of their application after the application deadline and after all applications have been reviewed. Visit the NAF website www.ataxia.org to download the application. If you would like an application sent to you in the mail, contact Lori Shogren at (763) 553-0020 or Lori@ataxia.org to request one.

 

Program Overview

The complete conference schedule will be listed in the Winter 2015-2016 issue of Generations and on NAF’s website when available. The following is a brief program overview.

 

Pre-Meeting Activities

Thursday, March 31

Registration Opens – 9 a.m. – 5 p.m. Come by and get your conference program, name badge, Saturday banquet tickets, and welcome bag. Registration will be open Thursday through Sunday morning.

Silent Auction Item Drop-off – 9 a.m.- 5 p.m.

Exhibitors – 12 – 5 p.m. - Set-up available at 10 a.m. Exhibitors will be present from Thursday morning through Sunday morning as their schedules permit. If you would like to recommend a company or service provider to be an exhibitor at the conference please contact NAF at joan@ataxia.org. If you are interested in information about exhibiting you will find more detailed exhibitor information and an application form in the Exhibitor Packet.

Leadership Meeting – 1-3 p.m. This meeting is designed to provide information and support to NAF’s Chapter Presidents, Support Group Leaders and Ambassadors. The meeting is a valuable resource for volunteers who serve in these appreciated positions. If you are interested in becoming a NAF Support Group Leader or Ambassador, contact Lori at lori@ataxia.org prior to the meeting.

Fundraising Meeting – 4-5 p.m. Anyone who is interested in learning more about fundraising, organizing a fundraising event, or sharing fundraising strategies is encouraged to attend.

Ataxia Investigators Meeting (AIM) Poster Session for AAC Attendees – 5:15 - 6:15 p.m.

 

Tenative Program Overview

Friday, April 1

Registration – 8 a.m. – 5 p.m.

General Sessions – 9 a.m. – 12:30 p.m.. Friday morning will start the General Sessions in the Grand Sierra Ballroom. The General Sessions will incorporate practical aspects in addition to the research and medical topics of ataxia.

Exhibitors – 8 a.m.- 5 p.m.

Silent Auction Bidding – 8:30 a.m.- 5 p.m. The Silent Auction is a fun way to help raise funds for NAF and for you to bid on wonderful items. All items being donated for the Silent Auction are due in the Silent Auction room by Friday, April 1st at 4:00 p.m. This long-standing NAF tradition begins on Friday at 8:30 a.m. with the final bidding ending on Saturday at 1 p.m. Good luck! The winning bids will be posted by 3:30 p.m. on Saturday. Winners MUST pick up and pay for their items from 4 p.m. until 7 p.m. on Saturday. Auction items range from something that represents your state or country, art work, sports memorabilia, theme baskets, hand-crafted items, hotel stays and weekend getaways. Bring an item to donate and then have fun bidding on the items of your choice. Thank you for supporting this event and sharing items from your local area.

Activity Room – 10 a.m. – 5 p.m. The activity room is open to all ages. Persons under the age of 12 must be accompanied by a parent or guardian who is age 18 or older. A description of scheduled activities coming soon.

Birds of a Feather (Group A) – 2 - 5 p.m. Attendees will have the opportunity to attend small group sessions. Groups will be divided by different types of ataxia or different roles that attendees are experiencing such as spouse or parent. This year the Birds of a Feather (BOF) sessions will be offered on Friday and Saturday afternoon with half of the sessions on Friday and the other half on Saturday. The Friday BOF sessions will be referred to as “Group A”. The Saturday BOF sessions will be referred to as “Group B”. The schedule will be available in the Winter 2015-2016 issue of Generations and on NAF’s website when available. Please review the schedule for your specific session. This is a tremendous opportunity to meet others who share a similar situation or the same ataxia diagnosis. Previous attendees have said these group sessions were the most valuable segment of the annual membership meeting. Medical professionals will facilitate groups and be available for questions.

Meet & Greet Reception – 5 p.m. NEW TIME All registered conference attendees are welcome to attend. Admittance to this event and the snacks that will be served are included with your registration fee. A cash bar will be available. This event will begin with attendees gathering in the seating area designated for their region. Your region will be printed on your name badge. After meeting others in your region, attendees will then have the opportunity to meet with other NAF Bulletin Board and Facebook users in that designated seating area. You are encouraged to prepare contact cards to distribute at this event. Contact cards should only include information you wish to distribute. Information on contact cards have included name, email address, state, and diagnosis/affiliation. Repeat attendees are encouraged to welcome a First Time Attendee. First Time Attendees are identified with a First-Timer Ribbon on their name badge.

 

Saturday, April 2

Registration – 8 a.m. – 5 p.m.

Exhibitors – 8 a.m. – 5 p.m.

General Sessions - 9 a.m.- 12:00 p.m. General Sessions continue in the Grand Sierra Ballroom.

Silent Auction Bidding – 8:30 a.m.- 12:30 p.m. The Silent Auction is a fun way to help raise funds for NAF and for you to bid on wonderful items. This long-standing NAF tradition begins on Friday at 8:30 a.m. with the final bidding ending on Saturday at 1 p.m. Good luck! The winning bids will be posted by 3:30 p.m. Winners must pick up and pay for their items from 4-7 p.m. on Saturday.

Activity Room – 10 a.m. – 5 p.m. The activity room is open to all ages. Persons under the age of 12 must be accompanied by a parent or guardian who is age 18 or older. A description of scheduled activities coming soon.

Family Planning Options Session: 2– 5 p.m. Prospective parents who have been diagnosed with ataxia or are at-risk for ataxia have many options which may prevent the passage of the ataxia gene to their children. This new Birds of a Feather session will discuss various options including pre-implantation genetic diagnosis (PGD) and pre-implantation genetic screening (PGS), genetic counseling, adoption, as well as other choices to consider. The TV news show “60 minutes” aired an episode on October 26, 2014 that included a piece on PGD. Here is a link to the “60 Minutes” report http://www.cbsnews.com/news/breeding-out-disease-with-reproductive-genetics/.

Birds of a Feather (Group B) – 2 - 5 p.m. This year the Birds of a Feather (BOF) sessions will be offered on Friday and Saturday afternoon with half of the sessions on Friday and the other half on Saturday. The Friday BOF sessions will be referred to as “Group A”. The Saturday BOF sessions will be referred to as “Group B”. The schedule will be available in the Winter 2015-2016 issue of Generations and on NAF’s website when available. Please review the schedule for your specific session.

Saturday Evening Banquet – 7 p.m. in the Grand Sierra Ballroom. The cost of the banquet is included in your registration fee, however all beverages will be available at a cash bar. The banquet includes a plated dinner entrée that you will select when you register for the conference. When you arrive at the conference please reserve your seating and verify your entrée selection prior to the banquet. Volunteers will be at the banquet ticket tables near NAF registration to assist you as you obtain your banquet tickets, select your seating, and confirm your entrée selection.  This is a ticketed event. Your banquet ticket will be required to enter this event. We look forward to a wonderful dinner together and a fun evening of socializing.

 

Sunday, April 3

Registration – 9 a.m. – 11 a.m.

Exhibitors – 9 a.m. – 11 a.m.

General Sessions – 9:00 a.m.- 12:45 p.m. Sunday morning wraps up the 2016 Annual Ataxia Conference with a final round of General Sessions in the Grand Sierra Ballroom. Don’t miss this general session which includes a wrap-up of all presentations, so if you missed any during the weekend, you will hear highlights of each speaker’s presentation.

 

 

Conference Presentations and Recordings

To better serve the entire ataxia community, NAF began having the General Session Presentations audio synched by Digital Conference Providers at the 2010 Annual Membership Meeting. These recordings include the speakers’ audio presentations synched with their PowerPoint slides. The recorded sessions from the 2012-2015 AMMs can be purchased at http://www.dcprovidersonline.com/naf/ or ordered using the order form found in your meeting program. A limited number of recorded presentations for each meeting are available for viewing at no cost. You are encouraged to take advantage of these sessions offered for free. Presentation slides from the 2016 General Sessions will be posted on NAF’s website after the conference. A Limited number of General Sessions will be released on NAF’s YouTube Channel in the months following the conference.

 

VOLUNTEER INFORMATION

Volunteers donating their time contribute greatly to the success of each National Ataxia Foundation Annual Ataxia Conference. We need volunteers for the 2016 AAC. To sign up as a volunteer at the 2016 AAC or to obtain information about volunteer opportunities, please contact Dianne Williamson at diannebw@aol.com or (256) 520-4858.

 

ANNUAL ATAXIA CONFERENCE POLICIES

Image Consent Policy

By attending the 2016 NAF Annual Ataxia Conference you give your consent, unless you notify us otherwise, to use your image captured during the conference through video, photographs, or digital imagery, to be used by the National Ataxia Foundation in promotional materials, publications, and web site and waive any and all rights to these images.

Filming/Recording Policy

The recording of any audio/or videotaping of conference sessions, or at any venue of the NAF Annual Ataxia Conference is forbidden, without prior approval in writing by the NAF. PowerPoint presentations will be available on the NAF website after the completion of the Annual Ataxia Conference. Attendants at the Annual Ataxia Conference expect, and deserve, the right to privacy. NAF does photograph and record at the AAC, and will make photographs and other media available for news, educational, and promotional purposes.

Solicitation Policy

Soliciting funds for organizations other than the National Ataxia Foundation or for individual benefit is prohibited at NAF events. Any materials distributed seeking funds for other organizations or for individual benefit will be removed.

 

About Orlando

A world-renowned destination, Orlando is the place to make all of your vacation dreams come true. Of course, it is beloved for its theme parks: Walt Disney World, Universal Orlando® Resort, SeaWorld Orlando and many others. With seven of the world’s top 20 theme parks in one destination, not to mention nearly 100 other attractions, Orlando certainly knows how to entertain. Discounted Disney theme park tickets can be found at http://www.mydisneymeetings.com/59aac/. Orlando also beckons with world-class resorts, shopping opportunities for every budget, all-season golf courses, and some of the most enticing dining opportunities on the planet. Less known but equally inviting are the downtown sections of Orlando itself and many nearby towns in Central Florida – places that celebrate public art and take pride in offering a myriad of cultural opportunities.

Transportation - Mears Transportation Group runs lift-equipped shuttle service between hotels, attractions and Orlando International Airport, but 24-hour advance reservations are required. The I-Ride Trolley is the best way to see International Drive. The trolleys, featuring lifts and lock-downs, operate daily from 8 a.m.–10:30 p.m. with service every 20 minutes.

Weather - The month of April is characterized by rising daily high temperatures, with daily highs increasing from 80°F to 85°F over the course of the month. Daily low temperatures range from 59°F to 64°F

Consumer Alert (Source-Trip Advisor): While theme parks such as Walt Disney World, Universal and Sea World may seem pricey, travelers should be cautious when looking for discounted tickets. While some legitimate companies run deals and discounts for Orlando theme parks, some offers may be deceiving and even illegal. Tourists should be aware of which companies are legitimate operations and which may not be. Tourists should be especially careful of companies advertising discount theme park tickets at booths in tourist areas in Florida. Many of these are run by timeshare sales companies offering the discount as part of a sales pitch. Some booths are selling tickets that have been acquired secondhand and illegally from other tourists. Some tourists may be approached about selling their tickets, but travelers are advised to refuse, since the buying and selling of used tickets is illegal in the state of Florida. Some theme parks, such as Walt Disney World, have introduced security measures such as finger scans to eliminate the use of illegal tickets, so it is possible that a ticket bought through an illegitimate company will be of no use. In addition, attempting to use an illegal ticket may have legal repercussions. Many of the booths that sell the tickets open up and disappear very quickly, so it can be difficult to track down those responsible for any crime. If it looks too good to be true, it probably is.

Travel Advisory: The NAF Annual Ataxia Conference is being held during a busy time in Orlando. The airport, conference hotel, theme parks, restaurants, and roadways will be busy. Please plan accordingly.

Please visit www.visitorlando.com, for a complete list of attractions, planning, and transportation information.

 

Caribe Royale

The Caribe Royale is the official conference hotel of the 2016 NAF Annual Ataxia Conference. The Caribe Royale is located on World Center Drive and 15.5 miles from the Orlando International Airport at 8101 World Center Drive, Orlando, FL 32821.

For your stay and planning purposes at the Caribe, the following information is provided.

  • The meeting space being held for the NAF is in the Grand Sierra Ballroom area of the Grand Caribe Convention Center. Golf Cart transportation to and from your guest room, the convention center, and/or the main reception building can be requested if required by dialing 4903 from any house phone or calling (407) 239-8000 if a house phone is not available. This service is not a replacement for scooters and wheelchairs. Please bring or rent those items if required.

  • Standard room reservations at the Caribe Royale can be made online at https://bookings.ihotelier.com/bookings.jsp?groupID=1477001&hotelID=5636. For guests who prefer to phone in their reservation call Hotel Reservations at 800-823-8300 and ask for the National Ataxia Foundation’s group rate which is under the group name, “National Ataxia Foundation.” Reservations at group rate will be available until February 27, 2016. The NAF group rate starts at only $149 +tax for Standard Rooms. The $19.95 per night resort fee is waived for attendees booked inside the NAF room block. See the Room Type Guide for additional details.

  • All ADA rooms must be reserved through the NAF office. ADA rooms cannot be reserved through the hotel. Availability of ADA room types are limited. Please have alternative room types in mind when requesting a reservation for an ADA room. For more detailed information about the room types available refer to the Room Type Guide. To inquire about the availability of an ADA room at the Caribe please contact the National Ataxia Foundation at (763) 553-0020 or lori@ataxia.org. ADA rooms cannot be reserved through the hotel.

  • If you need ADA equipment you are encouraged to bring those items with you or make arrangements to rent equipment locally. Resources to rent equipment can be found in the Orlando Services and Resources section of this article. The NAF is unable to provide ADA equipment however the Caribe Royale may have a limited number of shower chairs, grab bars, or detachable shower heads available. Be sure and request these items when making your reservation if needed.

  • Parking at the Caribe Royale – Self Parking is complimentary. Valet Parking is available at Caribe Royale. Valet Parking for those with disabilities is complimentary. Please identify that you are with the National Ataxia Foundation Group if you require this service. The costs are as follows: $9 plus tax Day Guest Valet (per day) and $12 plus tax Overnight Valet (per night). Visit their Restaurant/Bar and get your ticket validated (3 hour max). There is ample parking available in the open lot surrounding the resort and convention center. If you are planning on using a handicap parking space bring your out-of-state or international disabled parking permit with you. It should be prominently displayed in the windshield of the car when you are parked in designated public handicapped parking spots. Temporary permits are not available.

  • Service Dog Information - The service dog relief area at the Caribe Royale will be designated near the Convention Center and Tower II.

  • Transportation Options - Guests staying at Caribe Royale and Buena Vista Suites can easily enjoy much that Orlando has to offer with a variety of discounted and complimentary transportation options. Complimentary scheduled shuttle transportation to all four Walt Disney Parks as well as Disney Springs (formally known as Downtown Disney) in the evening for dining and entertainment options is available. Shuttle reservations can be made up to 30 days in advance. Lift-equipped shuttle service reservations are required at least 24-hours in advance. All other reservations must be made at least one hour prior to departure, first come, first served. It is requested that attendees be at the bus stop 10 minutes early. Shuttle reservations can be made by contacting at Guest Services at (407) 238-8010 prior to arrival or in the main lobby 7 days a week 7 a.m. – 10 p.m. or at Ext. 8010 when you are on-site. Please note there are some shuttle service changes, see the Caribe Royale website http://www.thecaribehotelsorlando.com/transportation for additional information.

  • Standard WiFi package (Basic Plan) for up to (2) devices is complimentary in guest rooms for AAC attendees. The price is currently $4.99 per day to upgrade your plan to (4) devices per suite. Upon check in you can access the internet by entering the suite number and last name of the individual listed on the room reservation.

  • Visit the Caribe Royale website http://www.cariberoyale.com/ for more information.

   

The following information can be used as a guide as you plan your stay and transportation needs in Orlando. The National Ataxia Foundation does not endorse products, services, or manufacturers. Those mentioned are included for your information only. The NAF assumes no liability for the use or contents of any product or service mentioned.

 

Transportation and Getting There


To help with your planning, NAF encourages you to access the links to important websites that inform you of your rights and your responsibilities when traveling by air. Go to NAF’s website at www.ataxia.org and select the Links tab at the top of the home page. You will be directed to a list of links. Select the category Accessible Travel to find websites such as Transportation Security Administration and the U.S. Department of Transportation. Passengers requiring any in-flight assistance should contact their airline before traveling. Airlines will generally work with passengers to try to meet their particular in-flight needs. Also, visit the TSA Cares website https://www.tsa.gov/travel/passenger-support for contact information to request screening assistance, scooter assistance, service animal assistance, and any other accessible services that you may need at the airports you utilize during your travels.

Orlando International Airport Ground Transportation

Information Booths are located throughout the airport including on Level 3 (Departures) of the A" Terminal at the West end (gates 1-59) near Sea World and at the East end (gates 70-129) near Sea World. Note: Information Booths are open from 6:00 a.m. to 8:00 p.m. Visit http://www.orlandoairports.net/transport/local_transport.htm or http://www.orlandoairports.net/ops/disabled.htm or call (407) 825-8463 for a complete listing of accessible services and ground transportation options to and from the Orlando International Airport.


Shuttle Vans (Approximate Rates to the Caribe Royale Per Person 1-way $20/Round Trip $32)

Located in Terminal A, on the Ground Transportation Level (Level 1), at the Commercial Lane parking spaces: A9-A10 and A36-A37

Located in Terminal B, on the Ground Transportation Level (Level 1), at the Commercial Lane parking spaces: B9-B10 and B40-B41


Mears Transportation Group
(407) 423-5566
https://www.mearstransportation.com/
Mears Transportation Group runs lift-equipped shuttle service between hotels, attractions and Orlando International Airport, but 24-hour advance reservations are required.


Super Shuttle
1 (800) 258-3829
http://groups.supershuttle.com/nationalataxiafoundationannualmeeting2016.html
Super Shuttle is providing a group discount for shuttle service from the Orlando International Airport to the Caribe Royale All- Suite Hotel and Conference center. To receive the group discount use the group reservation website or phone number that is provided. 24 hour advance reservations are required. If you require a van with a lift please select that option when making your reservation.


Taxi Cabs (Approximate Rates to the Caribe Royale $43-$52)

Located in Terminal A, on the Ground Transportation Level (Level) 1, at Commercial Lane parking spaces: A5-A8 and A22-A25

Located in Terminal B, on the Ground Transportation Level (Level) 1, at Commercial Lane parking spaces: B5-B8 and B30-B34


Ace Metro/Luxury Cab - (407) 855-1111
Diamond Cab Company - (407) 523-3333
Quick Cab - (407) 447-1444
Star Taxi - (407) 857-9999
Town & Country Transport - (407) 828-3035
Yellow/City Cab - (407) 422-2222


Rental Cars

If you are planning to rent a car in Orlando, be sure to call ahead to reserve vehicles with hand controls. Several rental companies —including Alamo, Avis, Dollar, Hertz and Enterprise — have these models available for rent.

 

Orlando Area Services and Resources

The following information can be used as a guide as you plan your stay in Orlando. The National Ataxia Foundation does not endorse products, services, or manufacturer. Those mentioned below are included for your information only. The NAF assumes no liability for the use or contents of any product or service mentioned.

 

Personal Care Attendants (PCA)

If you need a personal care attendant, please make arrangements prior to attending the meeting to have someone accompany you or have a PCA hired before you arrive in Orlando. Please note that NAF is unable to provide attendant care services. Due to liabilities and health concerns, NAF staff or volunteers and hotel employees are not able to provide PCA services.


Firstlight Home Care
(407) 434-0675
http://www.firstlighthomecare.com/home-healthcare-winter-park-orlando/

Sunshine In Home Care, LLC
(407) 992-6670
http://www.sunshineinhomecare.com/


Childcare

If you need childcare, please make arrangements prior to attending the conference. Please note that NAF is unable to provide childcare services. Due to liabilities and health concerns, NAF staff or volunteers and hotel employees are not able to provide childcare services.

Super Sitters, Inc.
(407) 382-2558
http://super-sitters.com/


Accessible Equipment, Wheelchair,
and Scooter Rentals

K&M Rentals
(407) 363-7388
http://www.km-rentals.com/

ScootaRama
(407) 897-6839
http://www.scootarama.com/

ScooterBug
800-726-8284
http://www.scooterbug.com/

Walker Mobility
(407) 518-6000
http://www.walkermobility.com/

Scootaround Inc
(888)441-7575
http://scootaround.com/