2018 Annual Ataxia Conference

2018 Annual Ataxia Conference

Conference Presentations

Thursday, April 5th – Friday, April 6th with an Ataxia Investigator’s Meeting Poster Session on Wednesday, April 4th at 5pm.

Philadelphia – hailed as the birthplace of freedom – is the perfect locale to host the 61st Annual Ataxia Conference (AAC). NAF and the Northeast Region are pulling out all the stops with this year’s theme, “Fighting for Freedom.” Never have we been closer to major breakthroughs in the quest for a cure; with the first SCA drug in phase 2/3 of clinical trials, and others in the pipeline. For that reason, it’s the perfect time to start to look forward to freedom from this rare disease and its symptoms. Mark your calendars – we hope to see you April 5-6, 2018 at Marriott Philadelphia Downtown in Philadelphia, PA. Register before February 13th to receive the early registration discount!

ONLINE REGISTRATION IS CLOSED. You can still register onsite!

About the Conference

AAC is the largest gathering of those affected by all forms of hereditary and sporadic Ataxia in the world. At AAC, attendees will have two days to meet and learn from world-leading Ataxia researchers and clinicians, visit vendor exhibits, and network with others. Sessions at the conference will include topics that help a person with Ataxia manage their symptoms, presentations from some of the top Ataxia researchers and clinicians, small groups that are disease-specific, and updates about the latest in Ataxia research. This year’s conference will also include a poster session from the Ataxia Investigators Meeting (AIM) that precedes AAC. The AIM Poster Session, with opportunity to meet Ataxia investigators, will be on Wednesday, April 4, 2018 from 5pm-6:30pm.

General Sessions and Birds of a Feather Sessions will be held on April 5-6, 2018. Full schedule is below:

AAC Schedule links to PDF(links to PDF)

Program Highlights

Ataxia Investigators Meeting (AIM) Poster Session

Wednesday, April 4, 5:00-6:30pm – This is a great opportunity for you to view the research posters that are being presented at the AIM. Ataxia investigators will be present to answer questions about their posters and ataxia research projects. Don’t miss the opportunity to meet face-to-face with the ataxia researchers from around the world.

Featured Topics

  • Clinical vs. Basic Science Research
  • FRDA and Other Childhood Ataxias
  • Genetic Testing
  • Management of Ataxia
  • Living with Ataxia
  • AIM Highlights
  • Barriers to Exercise
  • Financial Planning
  • Home Safety Based Modifications

2018 AAC Sponsors

Special Care

REATA Pharmaceuticals


Interested in research opportunities, service dogs, accessible equipment, and resources? Visit the Exhibit Hall to get up-close and personal with various organizations important to the Ataxia Community.

INTERESTED IN BEING AN EXHIBITOR? Learn more – View 2018 AAC Exhibitor Packet (links to PDF)

More Info on Exhibiting

Activity Area

The Activity Area will host activities like coloring, adaptive crafts, chair stretching, and Nintendo Wii. It is a kid-friendly spot to take a break and have some fun.


Our event volunteers help make AAC successful each year. Interested in volunteering? Whether it will be your first time or you are a returning volunteer, please contact our Volunteer Schedule Coordinator, Larissa Cammer, at Larissa.Cammer@gmail.com or 610-873-1852.

Hotel Reservations

The Philadelphia Marriott Downtown is the official conference hotel of the 2018 NAF Annual Ataxia Conference. The Philadelphia Marriott Downtown is located 10 miles from the Philadelphia International Airport (PHL) in the center of downtown Philadelphia at 1201 Market St., Philadelphia, PA 19107. The GPS address to hotel parking and the main front entrance of the hotel is 1201 Filbert St., Philadelphia, PA 19107. For your stay and planning purposes at the Philadelphia Marriott Downtown, the following information is provided.

  • All ADA rooms at the Philadelphia Marriott Downtown must be reserved through the NAF office starting on November 29 at noon Central Time by contacting 763-553-0020 or lori@ataxia.org. ADA rooms cannot be reserved through the hotel. Availability of ADA room types are limited. 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 needed equipment in advance.
  • Starting on November 29 standard room reservations at the Philadelphia Marriott Downtown can be made online at https://aws.passkey.com/go/NATIONALATAXIAaac. For guests who prefer to phone in their reservation call Hotel Reservations at 877-901-6632 and ask for the National Ataxia Foundation’s group rate which is under the group name, “National Ataxia Foundation.” Reservations at the group rate will be available until March 11, 2018. The NAF group rate starts at $189+tax for Standard Rooms. The width of the bathroom door in the standard sleeping rooms is 29″. Bathroom doors can be removed and beds can be lowered upon request.
  • Only Valet parking is available for $53.90 daily at the Philadelphia Marriott Downtown. There is a height restriction of 6’ 8’’ into the hotel parking ramp. The Valet parking fee for oversized vehicles is $63.70 daily. A self-parking ramp is located across the street from the hotel. There are other lower priced parking ramps in the area. Lower priced parking options can be found at http://www.philapark.org/locator/ or http://www.visitphilly.com/parkingdeals/.
  • Internet Access is $6.95 per 24 hours in guest rooms for AAC attendees. This discounted rate will be applied to guests in the National Ataxia Foundation room block.
  • It is required use a hotel guest room key card to access guest room floors using any of the hotel elevators. This is not required to access any of the meeting room floors or hotel lobby using the hotel elevators. Due to this restriction food deliveries outside of room service provided by the hotel have to be picked up at the front desk.
  • Outside grassy areas for service dog relief is located at Dilworth Park or in the bushes outside the hotel. An inside service dog relief area is located on the Headhouse Tower side of the Marriott skybridge. Please pick up after your service animal.
  • Jefferson Station is the SEPTA Train/Subway Station located next to the Philadelphia Downtown Marriott http://septa.org/stations/rail/jefferson.html. Estimated service fee to or from the Philadelphia Airport (one-Way) $8.50. Greyhound and Amtrak Station information can be found at http://www.marriott.com/hotels/maps/travel/phldt-philadelphia-marriott-downtown/#directions.
  • The Philadelphia Marriott Downtown is next to the Reading Market Terminal which offers locally grown and exotic produce plus the widest variety of restaurants under one roof. http://www.readingterminalmarket.org/.
  • The Philadelphia Marriott Downtown is in the center of downtown Philadelphia. Please be advised that there is a homeless population in the area. Be cautious of solicitations and consider exploring the city with a partner or in a group.
  • Please visit the Philadelphia Marriott Downtown website for more information http://www.marriott.com/hotels/travel/phldt-philadelphia-marriott-downtown/.
  • The Philadelphia Marriott Downtown is within walking distance to other hotels. If you are unable to get a guest room that you require at the Philadelphia Marriott you may wish to contact a reservations manager at the other hotels that are nearby. Hotels nearby include the Courtyard By Marriott, Lowes Philadelphia, Residence Inn Philadelphia, Home2 Suites By Hilton, and Hilton Garden Inn.

Conference Registration

The conference registration is available online starting November 29 and in the Winter 2017-2018 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 13, 2018 to receive the discounted early registration rate. General registration rates apply after February 13, 2018. Registrations after March 30 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

Before February 13
NAF Member $125
Non-Member $180

February 13 to March 30
NAF Member $150
Non-Member $205

After March 30 – On Site
NAF Member $200
Non-Member $255

No refunds of registration fees for cancellations received after March 21. 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 you can renew now online. If you are uncertain of your membership status, please inquire by contacting the office at 763-553-0020 or naf@ataxia.org. 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.

Conference Deductions by attendees

Rev. Rul. 2000–24, page 963 (In part)

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. 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 Lori@ataxia.org to request one.

Travel Grant Application (links to PDF)



By attending the 2018 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.


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.


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 Philadelphia

Welcome to Philadelphia, the first World Heritage City in the U.S. is also the second-largest city on the East Coast. Made famous as the birthplace of “life, liberty, and the pursuit of happiness”, the city’s strength is in the culturally diverse neighborhoods the merge to create a unique and dynamic destination. Revive history at “America’s most historic mile,” Independence Mall, home to the Liberty Bell, Independence Hall and the National Constitution Center.

Show Us Your Room Key or Badge Delegate Discount Pass – a special discount program for all convention attendees to use while in Philadelphia. Present your convention delegate badge at participating locations and take advantage of great discounts during your stay. Visit http://www.discoverphl.com/deals/ for participating locations.

Check out the printable Philadelphia Center City map (pdf) or view the Philadelphia interactive city map. For more information about Philadelphia, visit the Philadelphia Convention & Visitors Bureau website at www.discoverPHL.com.

Public transportation: Base cash fare for the SEPTA bus, trolley and subway system is $2.25; transfers are $1.00. Tokens can be purchased for $3.60 for a two pack. For families on the go, the best travel value is the Individual Independence Pass for $12 or a Family Independence Pass (good for one family of up to 5 people traveling together) for $29. Both provide unlimited travel on all SEPTA modes of transportation for a full day.

The Philly PHLASH Downtown Loop® is the most convenient and affordable transit service for visitors, with 22 stops located near popular destinations throughout Philadelphia. The PHLASH runs weekend-only service (Friday – Sunday) from March 23 – April 30.

The following information can be used as a guide as you plan your stay and transportation needs in Philadelphia. 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

Passengers requiring any in-flight assistance 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 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. 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. Video: How To Navigate an Airport in a Wheelchair

Detailed information about services and facilities at the Philadelphia International Airport (PHL) to assist travelers with disabilities can be found at Getting Around PHL: A guide for travelers with disabilities (links to PDF).

Travelers with hearing or speech impairments can call the Airport’s TDD/TTY number at 215-937-6755 or the Pennsylvania Relay Service at 800-654-5984 for TTY or 800-654-5988 for Voice Relay. Travelers with disabilities or medical needs who have questions about the policies or procedures at security checkpoints can call the TSA Cares Help Line at 855-787-2227.

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

Philadelphia International Airport Ground Transportation

Travelers who will need ground transportation in wheelchair accessible vehicles from the Airport should make arrangements at least 72 hours in advance of their arrival or departure. Taxis, vans, limousines, local SEPTA bus Routes 37 and 108 and CCT Connect stop at all bag claim areas, except for Terminal F where passengers can access ground transportation outside Terminal E bag claim.

Additional information is available at http://www.phl.org/Pages/Passengerinfo/Accessibility/GroundTrans.aspx or by calling the Ground Transportation hotline at 215-937-6958 or visiting a ground transportation counter in the bag claim areas (Terminal F passengers can access ground transportation and information in Terminal E bag claim).

SEPTA’s Airport Regional Rail Line can be accessed from the pedestrian walkways between the terminals and the bag claims at Terminals A-East, B, C and D, and E (Terminal F passengers can access the train platform at Terminal E). Elevators are located on the SEPTA platforms and pedestrian bridges. The train platforms are equipped with bridge plates to assist people who use wheelchairs in crossing the gap between the train and the platform. Yellow safety stripes are at the edges of all platforms.
The SEPTA Airport Regional Rail Line runs every 30 minutes between the Airport and Center City. Trains operate from Center City to the Airport between 4:25 AM and 11:25 PM, and from the Airport to Center City from 5:07 AM to 12:07 AM. The Airport Line stops at Terminals A-East, B, C-D and E (Terminal F passengers board/exit at Terminal E). The one-way fare to Center City is $8.00 cash only ($1.00 additional for connections to other SEPTA Regional Rail Lines at 30th Street, Suburban Station and Jefferson (Market East). Purchase an Individual Independence Pass from the conductor for $12.00 or a Family Independence Pass (good for one family of up to 5 people traveling together) for $29.00. Both provide unlimited travel on SEPTA buses, trolleys, subways, and Regional Rail for one whole day. Regional Rail & Rail Transit Map (links to PDF).

Amtrak and New Jersey Transit connections can be made at 30th Street Station. Connections to the Market Frankford Line can be made at 30th Street, Suburban and Jefferson (Market East) Stations. Connections to the Broad Street Line can be made at Suburban Station. https://www.amtrak.com/home.html

SEPTA accessible bus service is provided by the Routes 37 (to/from South Philadelphia), 108 (to/from 69th Street Transportation Center) and 115 (to/from Suburban Square in Ardmore). Bus fare costs $2.25; transfers are $1.00 (exact fare, cash only). SEPTA buses board at Zone 1 outside the baggage claim at Terminals A-East, B, C, D and E (Terminal F passengers board/exit at Terminal E).

SEPTA’s Customized Community Transport (CCT Connect) Service picks up registered passengers, seniors and individuals with disabilities at Zone 1 located outside of each bag claim area. To schedule a pick-up, registered users may call 215-580-7700 (TDD/TTY 215-580-7712), or log onto www.septa.org. For more information or to register visit http://www.septa.org/service/cct/#adaParatransit.

Car rental information phones are available at all bag claim areas for the following car rental agencies with offices on the Airport grounds: Alamo, Avis, Budget, Dollar, Enterprise, Hertz and National. Hertz also has a location at the Philadelphia Marriott Downtown. Vehicles equipped with hand controls are available at these agencies, however, as much as 72 hours advance notice is required. Such requests must be made at the time the vehicle is reserved. If you require a TDD/TTY phone to call any of the rental agencies, public pay phones with TDD/TTY equipment are available in each of the bag claim areas. Some ground transportation companies provide shuttle service with vans equipped with electric lifts. For more information on such services, please see a representative at the ground transportation counter in the bag claim areas (Terminal F passengers can access ground transportation and information in Terminal E bag claim).

Wheelchair Van Rental

Mobility Works Woodbury, NJ




Check with your taxicab company of choice for more information on fares and destinations served. There is a $28.50 flat-rate charge (one-way fare, airport access fee already included) to travel to Center City Philadelphia.  This area encompasses: Fairmount Ave (North), South Street (South) Delaware River (East) and University City/ 38th Street (West). Any destination that falls within these boundaries is eligible for the Center City flat rate. An additional $1.00 per passenger ($3.00 maximum) after the first passenger will be charged on flat rate trips between the Airport and Center City for passengers over age 12. It is recommended to make reservations in advance for wheelchair accessible transportation. Taxis reserved in advance can be met at Zone 6.

CompanyPhone #
All City Cab215-467-6666
City Cab215-492-6500
Olde City215-338-0838
Philadelphia Coach215-744-7777
PHL Cab215-232-2000
Quaker City215-728-8000
Yellow Cab215-333-3333

Shuttles Vans

To arrange for shuttle van service, it is best to make reservations at least 72 hours in advance. Reservations can also be made from ground transportation phones in all bag claim areas at the Airport. The following is the shuttle van company that offers wheelchair accessible transportation from the Philadelphia International Airport to Downtown Philadelphia Hotels.

CompanyPhone #

Delaware Express

25% Off Discount for AAC Attendees https://delexpress.hudsonltd.net/res

Reservation Instructions

  1. Visit Group Reservation Website https://delexpress.hudsonltd.net/res
  2. Enter Group Code: Ataxia
  3. Select Arrival for One-Way or Round-Trip reservations
  4. Enter your reservation information
  5. Select the type of ride service you would like. Select the option that has a picture of a wheelchair van if needed.
  6. Enter your payment and flight information.
  7. Call Delaware Express with any questions or to confirm your reservation.

Arrival Instructions

  1. Collect your checked luggage in the baggage claim area.
  2. Check in with the attendant at the ground transportation desk in the baggage claim area.
  3. The attendant will notify your driver and direct you to where to meet the shuttle.


Philadelphia Area Services & Resources
The following may be used as a helpful guide for your convenience.

Medical Equipment, Wheelchair, and Scooter Rentals

Advance Medical Equipment



All Care Medical Equipment



Interphase Medical Equipment



Marx Medical

Philadelphia, PA



Mr. Wheelchair




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. The following may be used as a helpful guide for your convenience.




HomeCare Associates



Interim Health Care



Personal Health Care



Pharmacy Options
The following may be used as a helpful guide for your convenience.

Arch Pharmacy



CVS Pharmacy


Pickwick Pharmacy



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