The National Ataxia Foundation

55th Annual Membership Meeting
"Roundin’ Up A Cure To Give Ataxia The Boot"

San Antonio, TX – March 16-18, 2012

2012 AMM Presentations

San Antonio’s Top Attractions (PDF)San Antonio’s Top Attractions in PDF

2012 AMM Pictures


The National Ataxia Foundation (NAF) Board of Directors and the National Ataxia Foundation Texas Ataxia Support Groups would like to welcome you to the 55th Annual Membership Meeting. Please join us at the Grand Hyatt San Antonio Hotel to learn, share, network, have fun, and enjoy the sites. The meeting will also celebrate NAF’s 55th anniversary in serving ataxia families.

The 2012 NAF Annual Membership Meeting will bring together NAF members and their families to meet and learn from world leading ataxia scientists and clinicians, but also to build new friendships and reunite with old friends. Whether this is your first meeting or your 55th, the 2012 Annual Membership Meeting will be filled with education, celebration, sharing, and caring!

The Annual Membership Meeting Registration Form will be available in the Winter 2011/2012 issue of Generations and on NAF’s website in January 2012. You may also view the latest information available about the Annual Membership Meeting on NAF’s website at

The Annual Membership Meeting Program you receive at the conference will be the most updated conference schedule. Please use your Meeting Program for meeting room assignments and times. Due to unforeseen circumstances the meeting schedule may change. We apologize in advance if that occurs. Any changes will be posted in the Registration room and announced at the meeting. For that reason we encourage attendees to plan to attend the entire meeting to insure that you will not miss a presentation.


Program Overview

Thursday, March 15

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.

Exhibitors – 10 a.m. – 8 p.m. Exhibitors will be present from Thursday through Sunday morning as their schedules permit. If you would like to recommend an exhibitor or if you are interested in exhibiting please contact NAF at

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.

NEW AIM Poster Session – 5:15 - 6:15 p.m. This session is an opportunity for you to view the posters that are being presented at the 4 NAF Ataxia Investigators Meeting. Poster presenters will be present to answer questions about their posters and research projects.

Friday, March 16

General Sessions – 8:30 a.m. – Noon. Friday morning will start the General Sessions in the Lone Star A-C Ballroom. Many of the world’s leading ataxia researchers and clinicians, along with other ataxia experts, will be presenting their latest research. The General Sessions will incorporate practical aspects in addition to research and medical topics. A 30-minute Question and Answer session will follow the morning General Sessions with a panel of the morning speakers.

Activity Room – An opportunity to observe and play the Nintendo Wii game system will be available Friday and Saturday from 10 a.m. to 2 p.m. You can try out the Nintendo Wii game system for yourself and ask questions about the Nintendo Wii system. The Nintendo Wii system is being used in many nursing homes and individual homes around the world by those with limited movement abilities who want to stay active. The activity room is open to all ages. Persons under the age of 12 must be accompanied by a parent or guardian who is age18 or older. Please limit your time on the Nintendo Wii system so that everyone interested in this product is provided the opportunity to try it. If you are interested in demonstrating an activity or craft in the activity room please contact Lori Shogren at with your proposal.

Get yourself a NAF tattoo! Temporary NAF Tattoos will be available in the activity room. Volunteers will be on hand to help apply tattoos as needed.

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. Please indicate on your registration form which BOF session you will attend so we can finalize the meeting room assignments.

Southwest Welcome Reception – 7 p.m. Please join us for a “Southwest Style” reception in the Lone Star Ballroom. All registered meeting attendees are welcome to attend and deck out in cowboy attire. Admittance to this event and food that is provided at this event is included with your registration. Snacks will be served. Not a meal. A cash bar will be available. Don’t forget to wear your cowboy duds.

Saturday, March 17

General Sessions – General Sessions continue all day in the Lone Star 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.

Church Services – 6 p.m. Catholic and Non-denominational church services will be held on Saturday for those who wish to attend.

Silent Auction – 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 afternoon with the final bidding ending at a NEW TIME 7:00 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!

Saturday Evening St. Patty’s Day Banquet – 7 p.m. The banquet will be held in the Lone Star A-C Ballroom. Please get your tickets – which are included in your registration fee – ahead of time in the Registration Room. All beverages will be available at a cash bar. You must reserve seating and select an entrée choice for the banquet in advance. The banquet will include a plated dinner with your choice of BBQ seasoned Chicken or vegetarian/vegan entrée that you select on your conference registration form. All entrée choices are gluten free. Please verify your entrée selection when you obtain your banquet tickets and select your seating. Banquet tickets are available by the NAF registration room. If you pick up tickets for a group of people please know the entrée selections for everyone in your party. Remember to wear your favorite shade of green.

Sunday, March 18

General Sessions – 9:00 a.m.- 1 p.m. Sunday morning wraps up the 2012 Annual Membership Meeting with the final round of General Sessions in the Lone Star 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 Conference Information

Registration – Please complete and return to NAF by February 15th, 2012 the registration forms which will be available on NAF’s website in the January 2012 and Winter 2011/2012 issue of Generations. Please fill out the registration form completely, as we need all the information to finalize plans. There will be an additional charge for registrations received after February 15th, 2012. Registration 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.

Contact Cards – You are welcome to bring contact cards with your name and additional information for exchanging with other attendees during the conference. This will allow you to connect with new friends throughout the conference and stay connected after the conference.

Tribute Roses – Stop by the Yellow Rose Table in the NAF Registration Room to purchase a yellow rose in hpnor or memory of a friend, a caregiver, support group, someone you want to remember, anyone special in your life, or even yourself. Cost is $5.00 per flower. Look for your flower on Saturday evening at the Banquet. Proceeds go to support the 2012 NAF AMM.

Video Taping – Video taping of the NAF Annual Membership Meeting General Sessions and Birds of a Feather Sessions is prohibited without prior written consent from the National Ataxia Foundation.

Image Waiver - By attending the 2012 NAF Annual Membership Meeting you give your consent, unless you notify us otherwise in writing, 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 you waive any and all rights to these images.

Fragrance Free – There are many people who experience unpleasant to severe effects from scented products, such as perfumes and colognes. For the comfort of our attendees we ask that all participants refrain from wearing perfume, cologne and other fragrances, and use unscented personal care products in order to promote a fragrance-free environment.


About San Antonio

San Antonio is the seventh-largest city in the United States of America and the second- largest city within the state of Texas, with a population of 1.33 million. Located in the American Southwest and the south–central part of Texas, the city serves as the seat of Bexar County. In 2011, it was estimated to be the 24th largest metropolitan area in the U.S. with a population of 2.2 million according to U.S. Census Bureau figures tabulated by Business First. San Antonio has characteristics of other western urban centers in which there are sparsely populated areas and a low density rate outside of the city. It was the fourth-fastest growing large city in the nation from 2000 to 2006 and the fifth-fastest-growing from 2007 to 2008.[4] The San Antonio–New Braunfels metropolitan area has a population of over 2.14 million based on the 2010 U.S. Census, making it the 25th-largest metropolitan area in the United States and third-largest in Texas.

The city was named for San Antonio de Padua, whose feast day is on June 13, when a Spanish expedition stopped in the area in 1691. Famous for Spanish missions, the Alamo, the River Walk, the Tower of the Americas, the Alamo Bowl, Marriage Island and host to SeaWorld and Six Flags Fiesta Texas theme parks, the city is visited by approximately 26 million tourists per year according to the San Antonio Convention and Visitors Bureau. The city is home to the four-time NBA champion San Antonio Spurs and the annual San Antonio Stock Show & Rodeo, one of the largest in the country.

Morgan’s Wonderland was built in the true spirit of inclusion to provide a place where all ages and abilities can come together and play in a fun and safe environment. Morgan’s Wonderland, the world’s first ultra-accessible family fun park, encompasses 25 acres of rides, attractions and activities for everyone and all are welcome!

“People, pride, passion, and promise have long been the pillars of San Antonio and these are the reasons you don’t just visit our city. You are welcomed, enchanted, inspired, moved, and renewed – deeply” (San Antonio Convention & Visitors Bureau). To start planning you trip visit


About the Grand Hyatt San Antonio

The Grand Hyatt San Antonio is the official conference hotel of the 2012 NAF Annual Membership Meeting. The Grand Hyatt San Antonio is located 9 miles from the San Antonio International Airport (SAT) in the heart of downtown San Antonio at 600 E Market St, San Antonio, TX 78205.

Expect the best at our remarkable San Antonio Texas luxury hotel. An exciting new addition to the city's landscape, Grand Hyatt San Antonio has employed a mix of modernism and Latin culture to bring a new level of excellence to our guests. Enjoy the sleek lines and contemporary decor of our spacious guestrooms featuring Hyatt Grand BedsTM, complimentary Wi-Fi high speed Internet access in guest rooms for NAF attendees and 32” flat panel TVs. The width of the bathroom door in the standard sleeping rooms are 35’’. Please visit the Grand Hyatt San Antonio website for more information

Self parking and valet parking are available. The Grand Hyatt San Antonio has extended a discounted parking rate of $10 per day for our conference attendees for self parking and overnight attendees. The NAF does not have a group rate for valet parking which is $33 per day for overnight guests or day parking which is up to 10 hours for $9. Overnight guests use their room key for unlimited discounted in and out access. There is a height restriction of 6’ 8’’ into the parking ramp. The are a few parking spots available at ground level for oversize parking.

The National Ataxia Foundation’s special group rate is $139.00 per night. Please be sure to make your reservations early in order to secure the special group rate. Some nights in the NAF room block are currently sold out. Be sure and search the nights individually and book the ones that are available when booking either online or talking with a reservationist by phone. Cancellations may occur. Keep checking the reservation website for availability. To check room availability online go to If you would prefer to make your reservations by phone, please call 1-888-421-1442 or (210) 224- 1234 and ask for the National Ataxia Foundation Conference special rate.

There were a limited number of ADA rooms available on a first-come, first-serve basis in our group block. To inquire about the availability of an ADA room at the Grand Hyatt San Antonio Hotel you MUST contact the National Ataxia Foundation at 763-553-0020 or

If you need ADA equipment be sure and mention this when making your room reservation. Shower chairs, tub bars, toilet frames, and detachable shower heads will be available on a first-come, first-serve basis by contacting the Grand Hyatt Front Desk upon check- in.

The National Ataxia Foundation has an additional group block at the Hilton Palacio del Rio. The Hilton Palacio del Rio is a short distance from the Grand Hyatt. The National Ataxia Foundation special rate at the Hilton Palacio del Rio is $189 per night. To inquire about a room reservation at the Hilton Palacio del Rio please contact NAF at

The Grand Hyatt San Antonio is within walking distance to other hotels. If you are unable to get a guest room at the Grand Hyatt you may wish to contact a reservations manager at the other hotels that are nearby. Some nearby hotels include Marriott Riverwalk, Marriott Rivercenter, La Quinta Inn & Suites Convention Center, Best Western Sunset Suites Riverwalk, Hilton Palacio del Rio, Fairfield Inn & Suites San Antonio Downtown/Alamo Plaza, Springhill Suites San Antonio Downtown/Alamo Plaza, Residence Inn Alamo Plaza, Comfort Suites Alamo/Riverwalk, Red Roof Inn Downtown, Emily Morgan Hotel, and Hampton Inn San Antonio Downtown.


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. In a post 9/11 world, the reality is that traveling by air comes with the sometimes difficult security checks and precautions – all for the safety of the flying public. We understand that flying to the NAF annual meeting may already be challenging for a person using a wheel chair, walker or any other assistive devices, without the added security checks. NAF would like your experience at the 55th Annual Membership Meeting to be pleasurable and memorable. And memorable in a positive way not because you were stalled at security for hours! For many attendees, the experience will begin at your home airport followed by arrival at the San Antonio International Airport before using ground transportation to arrive at the National Ataxia Foundation meeting. 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 categoryAccessible 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 San Antonio International Airport which is We look forward to having you attend the 2012 Annual Membership Meeting and wish you Happy Flying!

Travel Tips from the Transportation Security Administration (TSA) Contact Center:

TSA encourages passengers with disability and health-related needs to contact the TSA Customer Support Manager (CSM) at their departure airport prior to travel. CSMs may be able to facilitate the screening process and make arrangements for passengers traveling with special items.

CSMs may be contacted via the Talk to TSA section of the TSA Web site at We recommend that passengers contact their airports' CSM at least 24 hours before traveling and inform them of the items they will be transporting or the assistance they will need.

To assist passengers further, TSA has created notification cards that travelers may use to inform Transportation Security Officers (TSOs) about any disability, medical condition, or medical device that could affect security screening. Although these cards do not exempt anyone from security screening, their use may improve communication and help travelers discreetly notify TSOs of their conditions.

Currently, notification cards are not available on TSAs Web site; however, TSA has distributed them directly to various disability groups. Notification cards are available for download at disability-related Web sites such as by entering Notification Cards in the sites Search field.

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.

GO Airport Express Shuttle – San Antonio's official airport shuttle provider. Provides regular scheduled shuttle service from the San Antonio International Airport to the downtown hotels from 7:00 a.m. to 1:30 a.m. daily. Shuttle tickets are sold at the baggage claim area in Terminal 1 and Terminal 2. Shuttles depart from downtown hotels beginning at 4:00 a.m., approximately every 15 minutes, reservation required. NAF has a group rate with Airport Express to make a reservation please visit NAF’s group reservation website NAF’s group rate is $17.00 one way and $30 round trip person. A.D.A. compliant vehicles are available by request. To make this request you will need to type in “ADA Required” in the comments section provided on the reservation website. Hyatt-Grand is the selection you will want to make if staying at the conference hotel not Hyatt-Riverwalk. For more information, visit or call 210-281-9900.

Taxis – From: SAT Airport: Taxi cabs are available at the lower level curbside, outside of baggage claim, at Terminal 1 and Terminal 2. For assistance, please contact the Airport Ground Transportation Agent wearing an airport badge. Fare to San Antonio downtown areas are approximately $25 to $29 (U.S.) per taxicab. (Up to 4 may share a cab.) For a list of taxi cab companies please visit

San Antonio Wheelchair Taxi
(210) 260 - 6740

Public Buses and Street Car Service - VIA Metropolitan Transit is San Antonio's public transportation agency offering service throughout the city including streetcar service within the downtown area. To get downtown from the airport, go to the Lower Roadway (Arrivals/Baggage Level in Terminal A and B), across the marked crosswalk to the outer curb. VIA's stop will be halfway between Terminals A & B, clearly marked. You will catch VIA bus route 5, which operates everyday, and can get to beautiful downtown San Antonio in about 30 minutes for only $1.10. Once in the downtown area, VIA's streetcar service offers stops to or near most hotels, restaurants, the convention center and many visitors hot spots.

For added convenience, VIA offers a $4 Day Pass for purchase online and in advance of your trip. A Day Pass is good for unlimited rides on all regular bus and streetcar service for the one day indicated on the pass. The Day Pass will be activated the first time boarding the bus or streetcar.

For more details, visit or call 1-866-362-2020. Accessible services provided by VIA can be found at

Paratransit Services – Paratransit services are provided on a space-available basis. Funding for the program is provided by the Texas Department of Aging and Disability Services (DADS) through the Area Council of Governments (AACOG) and the City of San Antonio. The service is free, however, donations are encouraged.

Operating Hours: 6:00 AM to 6:00 PM, Mondays-Friday, except City holidays. Reservations are taken during office hours: 7:45 AM to 4:30 PM, Mondays-Fridays. Please call our reservation HOTLINE at 210-207-6680.

Car Rentals – There are several companies to choose from when renting a car at San Antonio International Airport. Please contact the company of your choice for more information. Car rental counters are located in Terminal A. Passengers can use the courtesy phones provided in the baggage claim area of Terminal A to request shuttle transport to the car rental company of their choice after hours or can proceed to the shuttle pick up area located outside the baggage claim area. To find the rental company that best suits your needs please visit

Accessible Van Services

Premier Accessible Van Rental

ALAMO Mobility, Inc.
1-888-442-5266 or (210) 697-8884

ams vans
1-866-459-6066 or (281) 220-6720

AA Vans 1-888-880-8267


San Antonio Area Services & Resources

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

Wheelchair & Scooter Rentals & Repair

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

Tom’s Wheelchair Rental
(210) 223-7878

Ability Scooters
(210) 315-8242


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.

The Attendant Network


Pharmacy Options

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

CVS Pharmacy