The National Ataxia Foundation
Annual Membership Meeting 2014
“Betting on Ataxia Research”
March 21-23, 2014
|Thank You to Our Sponsors|
2014 AMM Announcement (in PDF)
2014 AMM Agenda (in PDF)
The National Ataxia Foundation (NAF) Board of Directors and the National Ataxia Foundation Western Region Support Groups invite you to attend the 57th “Betting on Ataxia Research” Annual Membership Meeting (AMM). Please join us at Bally’s in Las Vegas to learn, share, network, have fun, and enjoy the sites.
The 2014 AMM will bring together NAF members and their families not only to 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!
The complete meeting schedule and events will be listed in the Winter 2013-2014 issue of Generations and online here. The following is a brief program overview.
Thursday, March 20
Registration Room Opens – 9 a.m. – 8 p.m. Come by and get your conference program, name badge, Saturday banquet tickets, and welcome bag. Check in your Silent Auction items and say hi to the NAF Staff and volunteers. Registration will be open Thursday through Sunday morning.
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 email@example.com prior to the meeting.
Exhibitors - Exhibitors will be present from Thursday afternoon through Sunday morning as their schedules permit. If you would like to recommend a company or service provider to be an exhibitor at the meeting please contact NAF at firstname.lastname@example.org. If you are interested in information about exhibiting you will find more detailed exhibitor information and an application form in the Exhibitor Packet.
Walk n’ Roll Meeting – 4-5 p.m. Anyone who is interested in learning more about organizing a Walk n’ Roll for Ataxia event or getting involved in an existing Walk n’ Roll for Ataxia event to support the important work of the National Ataxia Foundation is encouraged to attend.
AIM Poster Session – 5:15-6:15 p.m. This session is an opportunity for you to view the research posters that are being presented at the 5th NAF Ataxia Investigators Meeting. Poster presenters will be present to answer questions about their posters and ataxia research projects. Don’t miss this opportunity to meet face-to-face ataxia researchers from around the world.
Friday, March 21
General Sessions – 8:30 a.m. – 12:30 p.m.. Friday morning will start the General Sessions in the Grand Ballroom (Gold & Silver). The General Sessions will incorporate practical aspects in addition to the research and medical topics of ataxia. A 30-minute Question and Answer session will follow the morning General Sessions with a panel of the morning speakers.
Activity Room – 10 a.m. – 1 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. Temporary NAF Tattoos will be available during Activity Room hours each day. Volunteers will be on hand to help apply tattoos as needed.
Nintendo Wii: An opportunity to observe and play the Nintendo Wii game system will be available Friday and Saturday during Activity Room hours. You can try out the Wii for yourself and ask questions about the Nintendo system. The Nintendo Wii system is being used around the world by those with limited movement abilities who want to stay active. Please limit your time on the Wii so that everyone interested in this product is provided an opportunity to try it. Information about Physiotherapy as it relates to gaming will be available.
Coloring: Coloring activities will be available Friday and Saturday during Activity Room hours. Coloring is a therapy recommended for handwriting. Information describing the benefits of coloring will be available.
Yoga: Yoga for all abilities will be held at 12-12:30 p.m. on Friday in the Activity Room.
Birds of a Feather – 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 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.
Silent Auction Items Due - 4 p.m. All items being donated for the Silent Auction are due in the Silent Auction room by Friday, March 21 at 4 p.m. 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.
Meet & Greet Reception – 7 p.m. All registered meeting 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. 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, March 22
General Sessions - 8:30 a.m.- 4:45 p.m. General Sessions continue all day in the Grand Ballroom (Gold & Silver). A 30-minute Question and Answer session will follow the morning and afternoon General Sessions with a panel of the speakers who presented during those sessions.
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 Saturday at a NEW TIME 8:30 a.m. with the final bidding ending also at a NEW TIME 12:30 p.m. Good luck! The winning bids will be posted by 4 p.m. Winners must pick up and pay for their items from 4 p.m. until 7 p.m. that day.
Activity Room – 10 a.m. – 5 p.m. Nintendo Wii: An opportunity to observe and play the Nintendo Wii game system, Coloring activities.
Healing through Writing: For this facilitated session, from 1-2 p.m., interested participants are asked to prepare a writing piece to share. Your piece doesn't have to be freshly written for this event. It can be something you wrote at any time that you would like to share. Anyone is welcome to come share and/or listen.
Saturday Evening Banquet – 7 p.m. in the Grand Ballroom (Gold & Silver). 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 meeting. When you arrive at the meeting 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. We look forward to a wonderful dinner together and a fun evening of socializing.
Sunday, March 23
General Sessions – 9:00 a.m.- 12:30 p.m. Sunday morning wraps up the 2014 Annual Membership Meeting with the final round of General Sessions in the Grand Ballroom (Gold & Silver) followed by a Question and Answer Session with a panel of the speakers who presented during this time. Don’t miss this general session which includes a wrap-up of all the presentations, so if you missed any during the weekend, you will hear the highlights of each speaker’s presentation.
Meeting Presentations and Recordings
The PowerPoint slides from the general session presentations given will be posted on NAF’s website after the meeting. Additional general session presentations with audio will be available for purchase at http://www.dcprovidersonline.com/naf/.
The meeting registration form will available online starting December 16th and in the Winter 2013-2014 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 15, 2014 to receive the early registration rate. There will be an additional charge for registrations received after February 15, 2014. Registrations after March 3 will only be accepted on-site at the conference. 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 meeting registration fee includes attendance at all the sessions, light appetizers at the Friday evening Meet & Greet Reception and a delicious plated meal at the Saturday evening Banquet.
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 Membership Meeting. 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 email@example.com Visit www.ataxia.org to become a member or renew your membership online (both here). This will prevent unnecessary extra fees or errors in your membership status when you register for the 2014 Annual Membership Meeting. Thank you for taking the time to renew or become a member of the National Ataxia Foundation.
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. 24, 2014. 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.
About Las Vegas
Las Vegas, an ever-changing fantasy land of a city, has seen unbelievable expansion since it emerged from the desert 100 years ago. The sights and sounds of Las Vegas are enjoyed by over 38.9 million visitors every year.
Vegas Strip - The length of the Strip can be deceptive... it takes more time than you would think to get from one end to the other. But where else in the world can you marvel at dancing fountains (the Bellagio), see an erupting volcano (the Mirage), or watch pirates and sirens entertain on ships nightly? (Treasure Island, or T.I.) Not to mention downtown's Fremont Street Experience, which is a haven for pedestrians. Be sure to wear comfortable shoes and carry a bottle of water.
Please visit www.visitlasvegas.com and http://www.lasvegas.com/travel-professionals/agent-tools/special-needs-visitors/ for a complete list of attractions and planning information.
Weather in Las Vegas
In Las Vegas the average high temperature in March is 69 degrees and the average low temperature is 44 degrees.
Bally’s Las Vegas
Bally’s Las Vegas is the official conference hotel of the 2014 NAF Annual Membership Meeting. Bally’s Las Vegas is located directly on the Vegas Strip and minutes from the McCarran International Airport at 3645 Las Vegas Boulevard S, Las Vegas, NV 89109.
Offering more than 2,800 rooms and suites, Bally's Las Vegas is one of the world's largest resorts. Please allow yourself extra time to familiarize yourself with the layout of the hotel. The property also has a 70,000 sq. ft. casino, events center, five fine restaurants, spa, shopping mall, and two world-class showrooms. From upscale dining like Bally’s Steakhouse’s Sterling Brunch to casual eats including Mexican, American and Asian cuisine, Bally’s offers an impressive selection of Las Vegas restaurants. The Bally’s Las Vegas Avenue Shops are a shopping experience with more than 20 unique stores and boutiques with a countless array of souvenirs, jewelry and exclusive fashions. Visit the Bally’s Las Vegas website http://www.ballyslasvegas.com/ for more information.
Internet at Bally’s Las Vegas
NAF AMM attendees staying at Bally’s Las Vegas will enjoy complimentary internet in their guest room. When connecting to the internet the full price will be listed on the website. Your discounted price will be reflected on your guestroom billing statement. This discount applies to in-room internet for one device. Additional charges will apply for more than one device or for internet services selected outside the guestroom.
Parking at Bally’s
Valet parking and Self-parking are available. Both are complimentary. Bally’s complimentary parking garage is located off the Las Vegas Strip with a clearance of 7 feet. To get to the parking garage and valet, take Flamingo Rd East exit, cross Las Vegas Blvd., then take first right into Bally's.
Oversized parking is available in Bally’s east lot located off Flamingo Rd. RV’s are welcome, however, no hook-ups are available. Please note Bally’s Security Department must be contacted upon arrival for oversized parking authorization at (702) 967-4481.
Service Dog Information
The service dog relief area at Bally’s is located outside the Food Court Entrance on the lower level.
Standard room reservations at Bally’s can be made online at http://www.totalrewards.com/hotel-reservations?propCode=BLV&groupCode=SBNAF4
For guests who prefer to phone in their reservations call the Reservation Center at 800-358-8777 and ask for the National Ataxia Foundation’s group rate. Callers may also use your group code to identify the group, SBNAF4. A credit card is required at the time of booking and a deposit equal to one night's room and tax will be charged. Notice of cancellation must be received 72 hours prior to your arrival date, in order to receive a full refund of your deposit. Parking and valet is provided at no additional fee. Request rooms in the North Tower to be closest to convention spaces. Reservations at the group rate will be available until Tuesday, February 18, 2014. The NAF group rate is $99+tax Sunday – Thursday nights and $149+tax Friday and Saturday nights. Please note there is limited availability on discounted rate rooms.
ADA Hotel Rooms and Equipment
ADA rooms were available on a first-come, first- serve basis. To inquire about the availability of an ADA room at Bally’s 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 Las Vegas Services and Resources section of this article. NAF is unable to provide ADA equipment however Bally’s may have some extra shower chairs, grab bars, or detachable shower heads available. Be sure and request these items when making your reservation if needed. The width of the bathroom door in standard guestrooms is 26 inches.
Transportation and Getting There
The following information can be used as a guide as you plan your transportation needs in Las Vegas. The National Ataxia Foundation does not endorse products, services, or manufacturers. 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.
To help you with planning, NAF encourages you to access links to important websites that will 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 (here) to find websites such as Transportation Security Administration and the U.S. Department of Transportation. Also visit the website of the McCarran International Airport https://www.mccarran.com/.
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. Please note: If you are flying on United, Hawaiian, Virgin, JetBlue, Alaskan, Sun Country, or arriving from an international location you will arrive at Terminal 3 which is a long building. It is a long walk to baggage claim from Terminal 3. We look forward to having you attend the 2014 Annual Membership Meeting and wish you Happy Flying!
McCarran Ground Transportation
Lift Equipped Group Shuttles – are available at the McCarran International Airport to Bally’s. The cost is approximately $7.00 per person one way and $13.00 per person round trip. Group shuttles are an economical way to get from the airport to most major hotels. Shuttles run every 15 to 20 minutes. Some shuttles accommodate one wheelchair; some accommodate two. While en route, group shuttles make multiple stops at locations along the way. At Terminal 1, group shuttles are available on the west side of baggage claim, outside door exits 7 – 13. At Terminal 3, shuttles are located outside on Level Zero on the west end of the building to serve domestic travelers and on the east side of the building to accommodate international travelers. Airport personnel are available to help queue the lines and provide assistance as needed. Shuttles are not owned or operated by Bally’s Hotel or Caesar’s Properties. To book a shuttle reservation visit the shuttle provider’s website from the list of providers on the McCarran International Airport website https://www.mccarran.com/Go/Shuttles.aspx.
Taxis – All taxi companies in Las Vegas have lift-equipped vans accommodating one wheelchair. Ask in advance for an accessible taxi van (702) 888-4888. At Terminal 1, taxicabs are available on the east side of baggage claim, outside door exits 1 – 4. At Terminal 3, taxicabs are located outside on Level Zero on the west end of the building to serve domestic travelers and on the east side of the building to accommodate international travelers. Airport personnel are available to help queue the lines and provide assistance as needed.
Paratransit - If you are certified to ride paratransit, bring your certification and you will be allowed to ride for up to 21 days without a Nevada certification. Visit the RTC website http://www.rtcsnv.com/transit/paratransit/ or Call (702) 228-4800 one to three days in advance to schedule rides. The RTC Paratransit Shuttle Service is available by reservation at Terminal 1 and Terminal 3. The Terminal 1 shuttle stop is just outside the doors on Level Zero and the Terminal 3 stop is located on Level Zero, outside door exit 55.
Other Las Vegas Transportation Resources
Strip Trolley - The trolley operates on the Strip and pulls up to the entrance of each hotel on its route. Most are lift-equipped. For details visit http://www.lasvegas-how-to.com/trolley.php.
Monorail - Hop on the Las Vegas Monorail and experience a convenient, state-of-the-art alternative to traveling the world-famous Las Vegas Strip - in 15 minutes or less! Bally's / Paris Las Vegas Station is located at Bally's with access to Paris Las Vegas located next door. You can reach the station by heading toward the pool area through the Bally's Avenue Shops. Visit http://www.lvmonorail.com/ for schedules and ticket prices.
CAT (Citizens Area Transit) - Bus service is fully accessible, including buses that are lift-equipped. Reduced fares are available for persons with disabilities. Call (702) 228-7433 or visit http://catride.com/.
Parking - If you have a parking permit from your home city for your car's dashboard and you will be renting a vehicle in Las Vegas, bring it with you. You may also make advance arrangements for a free 90-day temporary disabled parking permit through the City of Las Vegas. Write to: City Hall, Parking Permit Office, 400 E. Stewart, Las Vegas, NV 89101, (702) 229-6431. Send a doctor's letter explaining the condition and the duration of the condition, and allow two to three weeks for a response. Valet parking is also an option at nearly every hotel.
Las Vegas Area Services and Resources
The following information can be used as a guide as you plan your stay in Las Vegas. 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.
Wheelchair Van Rental
6001 South Decatur Blvd. Suite N
Las Vegas, NV 89118
(702) 434-3030 Fax: (702) 434-3014
Toll Free: (855) 720-7146 Local: (702)815-8015 http://www.accessiblevans.com/wheelchair-vans-rental-las-vegas-nv.php
Better Life Mobility Center
Las Vegas McCarran International Airport
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 Las Vegas. 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.
2881 Business Park Court, Suite 226
Las Vegas, Nevada 89128
(702)385-1000 Fax: (702)452-1001
4423 W Flamingo Rd
Las Vegas, NV 89103
(702) 458-1137 Fax: (702)458-1423
Professional Healthcare Services
Right At Home
If you need childcare, please make arrangements prior to attending the meeting. 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.
Nannies & Housekeepers U.S.A.
Accessible Equipment, Wheelchair, and Scooter Rentals
The following may be used as a helpful guide for your convenience.
6001 S Decatur Blvd Ste N
Las Vegas, NV 89118
(702) 434-3030 (800) 546-7622
Better Life Mobility Center
Desert Medical Equipment
3555 W. Reno Ave Suite F
Las Vegas, NV 89118
Freedom Medical Supply & Equipment
8868 South Eastern Ave
Las Vegas NV 89123
(702) 386-9997 Fax: (702) 228-9996
Las Vegas Scooters
4350 S. Arville St. Bld E Suite #40
Las Vegas, NV 89103
(702) 610-4905 (866)775-4381
3758 S Las Vegas Blvd
Las Vegas, NV
150 E Harmon Ave
Las Vegas, NV
3765 Las Vegas Blvd S
Las Vegas, NV
ADA Assistance Office
Las Vegas Convention and Visitors Authority
Nevada Relay Service
Voice: 1-800-326-6888 or Dial 711
TTY: 1-800-326-6868 or Dial 711