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March 29-30, 2019

Ataxia: A treatable Disease

62nd NAF Annual Ataxia Conference

Las Vegas, NV

NAF hosts one of the largest Ataxia gatherings in the world – the Annual Ataxia Conference (AAC). At the conference we learn, share, network, and have fun! The 2019 AAC was held in Las Vegas, NV on March 29-30, 2019. It was titled, “Ataxia: A Treatable Disease.” This theme was woven throughout the conference sessions. Our goal was to help others learn the best treatments for Ataxia.

Day 1 Conference Videos

2019 AAC Welcome and NAF Update

Acknowledgments and Thanks

Ataxia: A Treatable Disease

Pioneering in Discovery: Research Update

Coping with the New Normal

Life Skills for Living with Ataxia

Day 2 Conference Videos

SCA Global Recap: Transforming Worldwide Research

Physical Therapy: Staying Strong and Balanced

Ending the Diagnostic Journey – Next Generation Genetic Testing

Management of Ataxia: Goals and Treatments

Hope and Promise for the Future

NAF Member Business Meeting

2019 AAC Photos

About the Conference

      The AAC is where some of NAF’s most important life-changing work is realized. Our goal is to bring people impacted by ataxia together to empower them with resources and a message of hope. This is the heart of NAF. The NAF exists to provide a sense of community that can be counted on to support each other. The AAC continues to inspire and open our minds and hearts to new possibilities. The 2019 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. 

      General sessions scheduled on Friday and Saturday mornings will include topics to help treat symptoms of Ataxia and receive updates about the latest in Ataxia research. The popular small group sessions, Birds of a Feather, are scheduled on Friday and Saturday afternoon. These small group sessions are for specific types of Ataxia or affiliation to Ataxia. This year’s conference will introduce the Ataxia Marketplace where you can visit with exhibitors, participate in research studies, try out the activities, attend bonus sessions, and network with others.

Thank You Sponsors

Conference Highlights

Keynote Speaker

Susan Perlman, MD
Ataxia: A Treatable Disease
       In the past 50 years, ataxia has moved from just a symptom to a group of identified genetic and non-genetic disorders with mechanisms that are now understood. In the past 10 years more and more, pharmaceutical companies are finding avenues of research and development that lead to medications that could relieve symptoms and slow down progression. In the next year we could have the first FDA approved drug for ataxia. Never let anyone tell you that there’s nothing that can be done for ataxia.

Ataxia Marketplace

       Interested in research opportunities, accessible equipment, activities, and resources? Visit the Ataxia Marketplace during the conference to find out more about those areas of interest and participate in other activities and bonus sessions like fundraising to fight Ataxia.

Additional Highlights

  • Research Participation Opportunities
  • Ataxia Panel Sessions
  • Lunch n’ Learn Sessions
  • Ataxia Research Updates
  • Birds of a Feather Small Group Sessions
  • Networking and Social Opportunities
  • Advocacy and Fundraising Information
  • Lots of Area Attractions

Hotel Reservations

       The Flamingo Las Vegas is the official conference hotel of the 2019 NAF Annual Ataxia Conference. The Flamingo Las Vegas is located directly on the Vegas Strip and minutes from the McCarran International Airport at 3555 Las Vegas Boulevard S, Las Vegas, NV 89109. Guests of the Flamingo can enjoy fifteen-acres of Caribbean-style foliage which includes an extravagant Wildlife Habitat and five separate pools, with cascading waterfalls, for swimming and sunbathing. Guests can also shop and dine at multiple outlets inside the hotel and right outside along the adjoining LINQ Promenade. Featured on the LINQ Promenade is the High Roller, a 550-foot-tall observation wheel.  The Flamingo Las Vegas is a very large facility. Please allow yourself extra time to familiarize yourself with the layout of the hotel and area. For your stay and planning purposes at the Flamingo Las Vegas, the following information is provided.

  • All ADA rooms at the Flamingo Las Vegas must be reserved through the NAF office starting on November 13 at noon Central Time by contacting 763-553-0020 or ADA rooms cannot be reserved through the hotel. If you need ADA equipment you are encouraged to bring those items with you or plan to rent equipment locally. The NAF is unable to provide ADA equipment. Be sure to rent or request from the Flamingo needed equipment in advance to be accommodated based on availability. The width of the bathroom door in the standard sleeping rooms is 26’’.
  • Starting on November 13 standard room reservations at the Flamingo Las Vegas can be made online at  For guests who prefer to phone in their reservation call Hotel Reservations at 800-732-2111and ask for the National Ataxia Foundation’s group rate which is under the group name, “National Ataxia Foundation.”  Reservations made through the hotel’s telephone call center will be assessed a $15 fee per reservation. This fee does not apply to reservations made online or through NAF.
  • Reservations at the group rate will be available while inventory lasts until March 8, 2019. The NAF Group Rate for standard and ADA hotel rooms is Sunday – Thursday $119 + $18 Resort Fee + 13.38% Tax and Friday and Saturday $159 + $18 Resort Fee + 13.38% Tax. Please note that upon booking your reservation, your credit card will be charged a deposit equal to the first night’s room and tax. To avoid forfeiture of deposit, please ensure all changes and cancellations are made at least 72 hours prior to scheduled arrival date.
  • Valet parking is available at the hotel east entrance. Valet parking is $15 for the first 4 hours or $20 for over 4 hours and up to 24 hours. Self-parking is available in the South Garage, located east of the main entrance. Self-parking is $9 for the first 4 hours or $12 for over 4 hours and up to 24 hours. Please let NAF know if you are driving a vehicle that exceeds the height clearance. 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.
  • Internet Access in your guestroom is included in the resort fee for up to 2 devices.
  • The service dog relief area at the Flamingo is located outside the valet entrance on the East side of the building / lower level.  Please pick up after your service animal.
  • Please visit the Flamingo Las Vegas website for more information
  • The Flamingo Las Vegas is within walking distance to other hotels. If you are unable to get a guest room that you require at the Flamingo Las Vegas, you may wish to contact a reservations manager at the other hotels that are nearby.

Conference Registration

        The conference registration is available online and in the Winter 2018-2019 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 1, 2019 to receive the discounted early registration rate. General registration rates apply after February 1, 2019. Registrations after March 23 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 Meet & Greet Reception and a plated meal at the Banquet.

Registration Fees

February 1 to March 23

NAF Member $150
Non-Member $205

On Site

NAF Member $200
Non-Member $255

No refunds of registration fees for cancellations received after March 23. 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 visit to become a member or renew your membership online. If you are uncertain of your membership status, please inquire by contacting the office at (763) 553-0020 or This will prevent unnecessary extra fees or errors in your membership status when you register for the 2018 Annual Ataxia Conference. Thank you for taking the time to renew or become a member of the National Ataxia Foundation.

Volunteer Information

       Volunteers donating their time contribute greatly to the success of each NAF AAC. We need volunteers for the 2019 AAC! To sign up as a volunteer at the 2019 AAC or to get more information about the volunteer opportunities please contact 763-553-0020 or

Conference Deductions By Attendees
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 can offer Travel Grants to help with a portion of the travel costs associated with attending the conference. 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. 6, 2019. Travel Grant applicants will be notified of the status of their application after the application deadline and after all applications have been reviewed. If you would like an application sent to you in the mail, contact Lori Shogren at 763-553-0020 or to request one.


Image Consent Policy

       By attending the 2019 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. The 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 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 StripThe 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 and 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.

      The following information can be used as a guide as you plan your stay and transportation needs in Las Vegas. 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 you with planning, NAF encourages you to access the links to important websites that will inform you of your rights and your responsibilities when traveling by air. Go to NAF’s website at 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 for your arrival or departure flights should contact their airline before traveling. Airlines will generally work with passengers to try to meet their in-flight needs. Also, visit the TSA Cares website 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. For your safety and for the safety of other travelers please do not leave your baggage unattended at any airport you visit during your travels.


      Detailed information about services and facilities at the McCarran International Airport (LAS) to assist travelers with disabilities can be found at The distance from the gates to baggage claim and ground transportation varies greatly depending on which airline you are arriving on. The maps on the airport’s website can give you an idea about the distance to baggage claim and ground transportation for the airline you are utilizing. Sunday and Monday are the heaviest departure days at the airport. If you are departing on once of these days it is recommended to arrive 30 minutes to an hour earlier than you normally would for your flight. 

     Many services such as skycaps, sighted guides, and wheelchairs are provided by the airlines.  Please contact your airline to reserve a wheelchair.

McCarran International Airport Ground Transportation

      Lift Equipped Group Shuttles – To get information regarding accessible shuttle transportation please contact the shuttle companies directly that are found on the McCarran International Airport website

      Taxis – Accessible taxi services are available at both terminals. A designated area is signed for travelers with disabilities. Taxi services are available on the east side of baggage claim, outside door exits 1 – 4 in Terminal 1. At Terminal 3, taxi services are located outside on Level Zero. There are 20 loading locations on the west end of the building and 10 loading locations on the east side to accommodate international travelers. Taxi services are also available at the McCarran Rent-A-Car Center.

       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 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.

       Ride Share Services – Uber and Lift do have an accessible ride option that can be selected when booking your ride. Accessible rides are limited so wait times for accessible rides tend to be longer. The distance to the ride share pick area is further to get to than the taxi or shuttle pick up areas.

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

      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 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

      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 & 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

Ability Center
(702) 434-3030
Fax: (702) 434-3014

Accessible Vans
Local: (702) 536-1842

Mobility Works of Las Vegas
(702) 876-9606

Las Vegas McCarran International Airport
(800) 456-1371

Personal Care Attendants

      Please note that NAF is unable to provide attendant care services. Due to liabilities and health concerns, NAF and hotel employees are not able to provide this service. Please do not attend without making arrangements for an attendant if you need one.

Comfort Keepers Las Vegas
2881 Business Park Court, Suite 226
Las Vegas, Nevada 89128
Fax: (702)452-1001

Nurse Core
4423 W Flamingo Rd
Las Vegas, NV 89103
(702) 458-1137
Fax: (702)458-1423

Professional Healthcare Services
(702) 362-0711

Right At Home
(702) 367-3400


      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.

Nannies & Housekeepers U.S.A
(702) 451-0021

Accessible Equipment, Wheelchair, and Scooter Rentals

Ability Center
6001 S Decatur Blvd Ste N
Las Vegas, NV 89119
(702) 434-3030
(800) 546-7622

Desert Medical Equipment
3555 W. Reno Ave Suite F
Las Vegas, NV 89119
(702) 876-9171

Freedom Medical Supply & Equipment
8868 South Eastern Ave
Las Vegas, NV 89123
(702) 386-9997
Fax: (702) 228-9996

Get Around Mobility
3111 South Valley Blvd Suite U108
Las Vegas, NV
(702) 637-0008

Las Vegas Scooters
84350 S. Arville St. Bld E Suite #40
Las Vegas, NV 89103
(702) 610-4905
(866) 775-4381

Mobility Works of Las Vegas
2100 Decatur Blvd
Las Vegas, NV 89102
(702) 876-9606

Scootaround Inc
(888) 441-7575


CVS Pharmacy
3758 S Las Vegas Blvd
Las Vegas, NV
(702) 262-9028

3765 Las Vegas Blvd S
Las Vegas, NV
(702) 739-9645

ADA Assistance Office

Las Vegas Convention and Visitors Authority
ADA Coordinator
(702) 892-0711

Nevada Relay Service
Voice: 1-800-326-6888 or Dial 711
TTY: 1-800-326-6868 or Dial 711

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