The National Ataxia Foundation

56th Annual Membership Meeting
“Driving Together Towards A Cure”

Detroit, MI – March 15-17, 2013

The National Ataxia Foundation (NAF) Board of Directors and the National Ataxia Foundation Northeast United States Ataxia Support Groups would like to welcome you to the 56th Annual Membership Meeting (AMM). Please join us at the Detroit Marriott Hotel at the Renaissance Center to learn, share, network, have fun, and enjoy the sites.

The Annual Membership Meeting Registration Form will be available in the Winter 2012/2013 issue of Generations and on NAF’s website in January 2013. You may also view the latest information available about the Annual Membership Meeting on NAF’s website at Join NAF’s e-blast list for AMM announcements and program updates.

The Annual Membership Meeting Program you receive at the conference will be the most current conference schedule. Please use your Meeting Program for meeting room assignments and times.


Program Overview

Thursday, March 14

Registration Room Opens – 9 a.m. – 8 p.m. Come in and get your conference program, name badge, Saturday banquet tickets, welcome bag, and conference t-shirt. Check in your Silent Auction items and say hi to the NAF Staff and get acquainted with the layout of the hotel. The Registration Room 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 a leader who is unable to attend the meeting, please indicate one representative who will attend in your place. Meeting attendees will have questions and concerns addressed, learn from peers and professionals and have the opportunity to meet others and exchange tips and ideas. If you are interested in becoming a NAF Support Group Leader or Ambassador, contact Lori at prior to the meeting.

Fundraising Meeting – 4-5 p.m. This meeting is for anyone that is interested in learning more about doing a fundraiser to support the important work of the National Ataxia Foundation.

Friday, March 15

General Sessions – 8:30 a.m. – Noon. Friday morning will start the General Sessions in the Renaissance Ballroom. Many of Michigan’s leading ataxia researchers and clinicians will be presenting their latest research and clinical expertise that morning. The General Sessions will incorporate practical aspects in addition to the research and medical topics. A 30-minute Question and Answer session will follow the morning General Sessions with a panel of the morning speakers.

Exhibitors - Exhibitors will be present from Friday 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 If you are interested in information about exhibiting you will find more detailed exhibitor information and an application form on NAF’s website.

Birds of a Feather – 2 - 5 p.m. Attendees will attend small group sessions. Groups will be divided by different types of ataxia or different roles that attendees are experiencing, i.e. caregiver, 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 be circulating between groups and 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 15th at 4 p.m. Thank you for supporting this event and sharing items from your local area.

Welcome Reception – 7 p.m. Please join us in the Renaissance Ballroom for a welcome reception. 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.

Saturday, March 16

General Sessions - 8:30 a.m.-5 p.m. General Sessions continue all day in the Renaissance Ballroom. 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 a.m.- 1:30 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 with the final bidding ending at a NEW TIME 8:00 a.m. with the final bidding ending also at a NEW TIME 1:30 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. 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.

Saturday Evening Banquet – 7 p.m. in the Renaissance 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 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 the NAF registration room to assist you as you obtain your banquet tickets and select your seating. If you plan to pick up tickets for a group of people please know the entrée selections for everyone in your party.  We look forward to a wonderful dinner together and a fun evening of socializing.

Sunday, March 17

General Sessions – 9:00 a.m.- 1 p.m. Sunday morning wraps up the 2013 Annual Membership Meeting with the final round of General Sessions in the Renaissance Ballroom followed by a Question and Answer Session with a panel of the speakers who presented during this time. Don’t miss these important sessions!!


Additional Information

Conference Registration – The registration form will be available on NAF’s Website January 2013 and in the Winter 2012/2013 issue of Generations. Please fill out the registration form completely, including your travel information, as we need all the information to finalize plans. There will be an additional charge for registrations received after February 15th, 2013. Registrations after March 1st 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 that is planning on attending daily sessions, the reception, or banquet needs to register. Event entry will not be allowed without properly registered name tags.

Registration Fees – Being a member of the National Ataxia Foundation has its benefits – one being a lower registration fee for the Annual Membership Meetings. 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 call the office at (763) 553-0020 or go online at to become a member or renew your membership. This will prevent unnecessary extra fees or errors in your membership status when you register for the 2012 Annual Membership Meeting. Thank you for taking the time to renew or become a member of the National Ataxia Foundation.

Travel Grant Program – Individuals interested in the program are required to submit a Travel Grant application. Adults or children with ataxia are eligible to apply for a travel grant. Applications will be accepted until Jan. 26, 2013. Travel Grant applicants will not be notified of the status of their application until after the application deadline when all applications have been reviewed. Visit the NAF website to download the application. If you would like an application sent to you in the mail, contact Lori Shogren at (763) 553-0020 to request one.


About Detroit

Detroit is the largest city in the U.S. state of Michigan, and the seat of Wayne County. Known as the world's traditional automotive center, "Detroit" is a metonym for the American automobile industry and an important source of popular music legacies celebrated by the city's two familiar nicknames, the Motor City and Motown.

Downtown Detroit has seen an increased role as an entertainment hub in the 21st century with the opening of three casino resort hotels, new stadiums, and a revitalized riverfront. The city's Greektown and three downtown casino resort hotels serve as part of an entertainment hub. Many of the area's prominent museums are located in the historic cultural center neighborhood around Wayne State University and the College for Creative Studies. These museums include the Detroit Institute of Arts, the Detroit Historical Museum, Charles H. Wright Museum of African American History, the Detroit Science Center, as well as the main branch of the Detroit Public Library. Other cultural highlights include Motown Historical Museum, the Pewabic Pottery studio and school, the Tuskegee Airmen Museum, Fort Wayne, the Dossin Great Lakes Museum, the Museum of Contemporary Art Detroit (MOCAD), the Contemporary Art Institute of Detroit (CAID), and the Belle Isle Conservatory. In 2010, the G.R. N'Namdi Gallery opened in a 16,000-square-foot complex in Midtown. Important history of America and the Detroit area are exhibited at The Henry Ford, the United States' largest indoor-outdoor museum complex. The best and fastest way to discover downtown Detroit is to travel on The People Mover. The People Mover schedule and route can be found on their website!.id.2.htm.  

Typically, March Weather in Detroit is characterized by the transition from winter to spring. There are fewer days in the month (22) that see freezing temperatures of 32 degrees or lower. In fact, the average temperature range is 28.5 to 45.2 degrees. That's not to say there are no exceptions. In fact, Detroit has seen both highs of 81 degrees and lows of -4 in the same month. For more information about Detroit visit the Detroit Convention and Visitors website


About the Detroit Marriott

The Detroit Marriot Hotel is the official conference hotel of the 2013 NAF Annual Membership Meeting. The Detroit Marriott is located 21 miles from the Detroit-Wayne County Airport (DTW) on the Detroit Riverwalk at the:

Detroit Marriott at the Renaissance Center
400 Renaissance Drive
Detroit, MI 48243

The Marriott boasts stunning views of the Detroit River and Canada. The Marriott is located in the GM Renaissance Center. The Renaissance Center is a large facility. Please take some time to familiarize yourself with the facility and the accessible routes to the meeting room levels, food court, and 2nd level. In order to successfully navigate these routes, it is important to understand the location of the elevators that provide transportation between levels. Due to its size, GM Renaissance Center is a complex building to navigate, especially for visitors to the building.  The base of the building has three public levels (2, 1, and A in descending order).  A series of overhead way-finding signs are located throughout the common area of the building to assist individuals in finding their destination.  Each sign contains general way-finding information and specific barrier free information.  On certain signs, the information applies to both general and barrier free requirements.  On other signs, specific barrier free information is listed separately either in orange text or with a barrier free symbol.  Some of the key barrier free routes are as follows:

Barrier Free Access to Level 2
Level 2 contains several destinations including access to the Office Towers 100-400, Riverfront 4 Theatres, Renaissance Conference Center, People Mover, Millender Center, and Courtyard by Marriott Detroit Downtown.  In order to access locations in the south half of the building on Level 2 (the Detroit River half), the P9 elevator is the access point from Levels 1 and A.  The P9 elevator is located in the GM Wintergarden in the far southeast corner at each level.  Signs are in place to assist in identifying this elevator.

In order to access locations in the north half of the building on Level 2 (the Jefferson Avenue half), there are two different sets of elevators to note.  From Level 1 coming up to Level 2, the Tower 200 Shuttle Elevators – noted as elevators #14 and #15 are the correct elevators to use and are marked with signs.

From Level A coming up to Level 2 in the north half, it is necessary to take two sets of elevators.  From Level A to Level 1, the Tower 200 #4 elevator is required.  Once on Level 1, it is necessary to transfer to the Tower 200 Shuttle Elevators to travel to Level 2 (described in the paragraph above).

Barrier Free Access to Level 1
Level 1 contains several destinations including access to River East Center (Towers 500-600), Jefferson Avenue, Beaubien Place (covered walkway to parking structure), most of the Ren Cen shops, and the Detroit Marriott at the Renaissance Center.  In order to travel to or from Level 1, the same elevators are available as described above in “Barrier Free Access to Level 2

Barrier free access to the Detroit Marriott at the Renaissance Center is available directly from the common area into the back entrance of the hotel motor lobby.  A push button operator is located at this access point.

Barrier Free Access to Level A
Level A contains several destinations including access to Atwater Street, GM Wintergarden, Food Court, and several other retail locations.  In order to travel to or from Level A, the same elevators are available as described above in “Barrier Free Access to Level 2.”

There is a free one hour tour available of the Renaissance Center offered Monday through Friday at 12-noon and 2p.m. For information on touring, shops, and dining in the Renaissance Center visit

NAF AMM attendees staying at the Detroit Marriott will enjoy a 50% discount off their guest room internet charges. The current regular price for internet per day is $12.95. 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. Self-parking and valet parking are available. The Detroit Marriott has extended a 40% discount in the Miller & Beaubien parking garages to NAF conference attendees for hourly and overnight parking. The NAF does not have a group rate for valet parking. There is a height restriction into the parking ramps of 6’ 11’’ at the Miller Garage, 8’ at the Beaubien Garage, and 7’ 11 at the Port Atwater Garage. A map of the parking garage options is posted on NAF’s website.

Guest room reservations are available for a special group rate of $139.00 per night plus tax. Please be sure to make your reservations early in order to secure the special group rate. To book your stay online go to or call 877-901-6632/313-568-8300 and request the National Ataxia Foundation group rate.

ADA rooms are available on a first-come, first- serve basis. To inquire about the availability of an ADA room at the Detroit Marriott Hotel you MUST contact the National Ataxia Foundation at (763) 553-0020 or

If you need ADA equipment be sure and bring this with you or make arrangements to rent equipment locally. NAF will no longer provide ADA equipment however the hotel may have some extra equipment available. The width of the bathroom door in the standard guest rooms is 26’’. Please reserve an ADA room if you require a wider bathroom door or accessible equipment.

The service dog relief area in the Detroit Marriott is located on the Lobby Level, outside on the terrace between the lobby and the Volt lounge. Please visit the Detroit Marriott website for more information


Transportation and Getting There

NAF is not responsible for transportation to and from the hotel. The following may be used as a helpful guide for your convenience.

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 while traveling by air. Go to NAF’s website at 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. You may also want to visit the website of the Detroit-Wayne County International Airport which is Passengers traveling with larger scooters and electric wheelchairs should indicate to their airline that they will need wheelchair assistance. Larger scooters and electric wheelchairs will not meet you at your gateway upon arrival. Wheelchair assistance will meet you at your gateway and transport you to oversized luggage in the baggage claim area to claim your scooter or electric wheelchair. Passengers arriving on Delta may have a long walk to baggage claim. Please request wheelchair assistance if you are arriving on Delta and have trouble walking a long distance. 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. We look forward to having you attend the 2013 Annual Membership Meeting and wish you Happy Flying!

Detroit-Wayne County Airport Ground Transportation

All ground transportation services including on and off airport parking lot shuttles, taxis, luxury sedans, hotel and rental car shuttles, in addition to transportation between terminals are located in the Ground Transportation Centers at the McNamara Terminal and North Terminal. Metro Cars is the only ground transportation company with on-site staff to provide ground transportation from the Detroit-Wayne County Airport. However, all transportation companies are permitted to drop passengers off at the Detroit-Wayne County Airport.

Metro Cars Sedan Service: To arrange for a wheelchair accessible vehicle, please call 800-456-1701 or visit Round trip reservations are recommended. Estimated car service fare to the Detroit Marriott is $56.

Metro Cars Taxicab Service: To arrange for a wheelchair accessible vehicle, please call 800-456-1701. Round trip reservations are recommended. Estimated fare to the Detroit Marriott is $50.

Transportation between terminals: The terminal-to-terminal shuttle stops at the:

  • North Terminal Ground Transportation Center
  • LC Smith Building Lower Level (Outer Curb)
  • McNamara Terminal Westin Hotel (Departures level)
  • McNamara Terminal Ground Transportation Center

For a wheelchair accessible terminal shuttle, please call (800) 377-1032.

Public Transportation: The SMART bus stop is located closer to the terminals, eliminating the need for a terminal shuttle for riders. SMART buses now stop on the outer roadway (lower level) near the Ground Transportation offices at the North Terminal. Most schedules run during heavy commuter times. For a SMART bus schedule call: (866) 962-5515 or visit

Wheelchair and Van Rental
American Access Mobility Rental, LLC
1-855-260-4384 or 1-810-503-4450

Mobility Works


Detroit Area Services & Resources

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

Border Crossing

Border Crossings Made Easy


Accessible Equipment, Wheelchair,
and Scooter Rentals

Binsons Home Health Care Service and Repair Center

Medical Town LLC
480-659-6765 or 877-701-6765

Volusia Medical Supply
1-866-956-2025 or 1-386-756-2025



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.

Home Health Care Network of Michigan



CVS Pharmacy
GM Renaissance Center Level 2 Tower 200