The National Ataxia Foundation

52nd Annual Membership Meeting
" Climb Every Mountain "

Seattle, WA - March 20-22, 2009

2010 AMM Registration
2009 AMM Announcement
2009 AMM Agenda
2009 Adult Travel Grant
2009 Child Travel Grant

            The National Ataxia Foundation Board of Directors and the National Ataxia Foundation Seattle Area Support Group along with the British Columbia Ataxia Society would like to welcome you to the 52nd Annual Membership Meeting. This is the first internationally co-hosted Annual Meeting. NAF commends the British Columbia Ataxia Society and the Seattle Area Ataxia Support Group for their coordinated efforts in planning this conference. Please join us in Seattle, WA, the heart of the Pacific Northwest, to learn, share, network, have fun, and enjoy the sites.

            The 2009 NAF Annual Membership Meeting will continue to focus on bringing together NAF members and their families to meet and learn from world leading ataxia researchers and neurologists but also to build new friendships and reunite with old friends. Whether this is your first meeting or your 52nd, the 2009 Annual Membership Meeting will be filled with education, celebration, sharing, and caring!

            The Annual Meeting Registration Form can be found in the Winter issue of Generations and on our website by January 5th. You may also view the latest information available about the Annual Membership Meeting on our website at www.ataxia.org. The Annual Membership Meeting Program you receive at the conference will be the most updated conference schedule. Please use your Meeting Program for room assignments and times. Due to unforeseen circumstances the meeting schedule may change. We apologize in advance if that is the case. 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 19

Leadership Meeting - 1:00-3:30 p.m. This meeting is designed to provide information and support to National Ataxia Foundation’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 is willing to 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 group leader or ambassador, contact Lori at lori@ataxia.org prior to the meeting.

Ride Ataxia III Arrival – Please join us in welcoming the riders participating in Ride Ataxia III. Ride Ataxia has been instrumental in raising ataxia awareness and funds for FRDA research. Visit http://rideataxia.blogspot.com/ for the latest Ride Ataxia III information.

Internet Group – This is your opportunity to meet some of those internet friends that you have met on the NAF chat room, NAF Bulletin Board, Internaf, Tricks of the Trade, Ataxia Forum, Ataxia Chat 2002, FAPG, u_r_notalone, and My Space NAF.

Friday, March 20

General Sessions – Friday morning will start the General Sessions in the Grand Ballroom. General Sessions are large group presentations, typically with a medical or research focus. This year the General Sessions will incorporate the practical topics in addition to the research and medical topics. Many of the world’s leading ataxia researchers and clinicians, along with other ataxia experts, will be presenting the latest research and additional information. A half hour Question and Answer session will follow the morning General Sessions with a panel of the speakers that presented.

Birds of a Feather – Friday from 2-5 p.m. individuals will be able to 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 where they were able to make friends for a lifetime. Medical professionals will be circulating between groups and available for questions.

Friday Night Reception – Please join us for a hors d’oeuvres reception in the Grand Ballroom. All registered meeting attendees are welcome to attend and admittance to this event is included with your registration.

Saturday, March 21

General Sessions – Saturday morning and afternoon continues with General Sessions in the Grand Ballroom. A half hour Question and Answer session will follow the morning and afternoon General Sessions with a panel of the speakers that presented.

Church Services – Catholic and Non-denominational church services will be held on Saturday at 6:00pm.

Silent Auction – The Silent Auction is a fun way to raise funds for the continuing important work of the Foundation. This long-standing NAF tradition begins on Saturday afternoon with the final bidding ending at 7:30 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!

Saturday Evening Banquet – The Saturday Evening Banquet will begin at 7:00pm in the Grand Ballroom. Please get your tickets – which are included in your registration fee – ahead of time. You must reserve seating for the banquet in advance. The banquet will include a plated dinner.

Sunday, March 22

General Sessions - Sunday morning wraps up the 2009 Annual Membership Meeting with the final round of General Sessions in the Grand Ballroom followed by a Question and Answer Session.

Additional Information

Conference Registration - Please complete and return the registration forms in the center of this issue of Generations to NAF by February 15, 2009. Additional registration forms are available on our website. Please fill out the registration form completely, as we need all the information to finalize plans. If you are bringing an attendant, please register together on the same page. Each person that is planning on attending daily sessions, the reception, or banquet needs to register. Event entry will not be allowed without the proper 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 www.ataxia.org 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 Annual Membership Meeting in January, 2009. Thank you for taking time to renew or become a member of the National Ataxia Foundation. Your attention to this detail is greatly appreciated.   

Video Taping – Video taping of the NAF Annual Membership Meeting General Session is prohibited without prior written consent from the National Ataxia Foundation.

Photo Waiver - By attending the 2009 NAF Annual Membership Meeting 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.

About Seattle

Christened "The Emerald City", Seattle is one of the most livable cities in the world. It actually receives less annual rainfall (36 inches) than New York City and Atlanta. Surrounded by lakes, rivers, Puget Sound, and mountains, Seattle is a recreation enthusiast's dream.

The greater Seattle area is home to 2.8 million people. Microsoft, Nordstrom and Starbucks are based here. Seattle is also known as the birthplace of the crazes for grunge rock and espresso coffee. This area is the home of baseball's Edgar Martinez, glass art's Dale Chihuly, musicians Pearl Jam, Soundgarden, Queensryche, Ann and Nancy Wilson of Heart and Kenny G., software giant Bill Gates, maestro Gerard Schwartz, actor Tom Skerritt, writers Ann Rule, Robert Fulghum, and Tom Robbins.

For more in depth information about the Seattle area in order to plan your trip please visit http://www.visitseattle.org/ or http://www.seattlesouthside.com/.  

About the Hotel

The Doubletree Hotel Seattle Airport is the official conference hotel of the 2009 NAF Annual Membership Meeting. The Doubletree Seattle Airport is located next to SeaTac International Airport and 20 minutes from Downtown Seattle at 18740 International Blvd., Seattle, WA 98188.

The Doubletree hotel is a resort-like setting with a full slate of amenities such as Complimentary shuttle service to Westfield Southcenter Mall and 24-hour airport shuttle service. A shuttle schedule to the Southfield Mall will be included in your pre-registration packet. If you need an ADA shuttle from the airport please contact the hotel directly at 206-246-8600 before you arrive to arrange transportation. There are two Doubletree Hotels in this area. Please make sure you take the correct airport shuttle to the Doubletree Hotel Seattle Airport. Do not take the Double Hotel Seattle Airport Guest Suites shuttle.

Also, complimentary wireless internet access in all public areas. All guest rooms include a coffeemaker, a USA Today, and a balcony. Please visit the Doubletree Hotel Seattle Airport’s website for more information http://doubletree1.hilton.com/en_US/dt/hotel/CTAC-DT-Doubletree-Hotel-Seattle-Airport-Washington/index.do.

Some guest rooms at this hotel can be located up a ¼ of a mile away from the lobby and meeting rooms. Please contact the front desk for transportation from your room to the main hotel entrance if your room is located too far for you to walk or transport yourself.

Self parking and Valet parking are available. Self parking overnight is $16 per night. Valet parking is $20 per night. Self parking for day use is $10 per day. NAF has a Special group parking rate of $8 for Self parking overnight and day use. NAF does not have a group rate for Valet parking. To receive the group parking rate you will need to bring the parking ticket that you received at the parking gate upon entering the hotel parking lot to NAF’s registration room which is Northwest 1 for validation.

Reservations – Guest rooms are available for a special group rate of $139.00 per night. Please be sure to make your reservations by February 16, 2009 in order to secure the special group rate. To book your stay online go to http://doubletree.hilton.com/en/dt/groups/personalized/CTAC-DT-NAF20090316/index.jhtml.

or if you prefer to make your reservations by phone please call toll free (800) 222-TREE and ask for the National Ataxia Foundation group rate. Our group code is NAF.

There were a limited number of ADA rooms available on a first-come, first serve basis in our group block. All of these rooms are now reserved at the Doubletree Hotel Airport. We still do have a small block of ADA rooms at the Hilton Seattle Airport. Scheduled transportation will be provided for NAF conference attendees to and from the Hilton and the Doubletree. To reserve an ADA room at the Hilton Seattle Airport please contact the National Ataxia Foundation at 763-553-0020. If you are interested in putting your name on our ADA room waiting list please contact the National Ataxia Foundation at 763-553-0020. Shower chairs, tub bars and toilet frames will be available on a first-come, first-serve basis by contacting the Doubletree Hotel and Hilton Hotel front Desk upon check in.

Transportation

NAF is not responsible for transportation to and from the hotel. The following may be used as a helpful guide for your convenience. At the SeaTac International Airport the General Information Desk is located across from baggage claim carrousel 12.

Complimentary Lift Equipped Shuttle – The Doubletree Hotel Seattle Airport offers complimentary lift equipped shuttle service to Westfield Southcenter Mall and 24-hour airport shuttle service. A shuttle schedule to the mall will be included in your pre-registration packet. Once you arrive at the airport you can get to the shuttle pickup area by taking the elevator located in the baggage claim area up one floor to the Skybridge (also labeled as Parking on the elevator). The Skybridge will take you to the Parking Garage. In the Parking Garage take the elevator down to the street level to the shuttle pick up area. There are two Doubletree Hotels in this area. Please make sure you take the correct airport shuttle to the Doubletree Hotel Seattle Airport. Do not take the Doubletree Hotel Seattle Airport Guest Suites shuttle. If you need an ADA shuttle from the airport please contact the hotel directly at 206-246-8600 before you arrive to arrange transportation. This shuttle can transport 2 wheelchairs at a time.

Taxis – STITA Taxi Service and Yellow Cab have lift equipped vehicles. Reservations should be made in advance. STITA Taxi Service can be reached at (206) 246-9999. Yellow Cab can be reached at (206) 622-6500.

Gray Line of Seattle - (206) 626-6080 has one charter coach that accommodates up to 4 wheelchairs and several small coaches that accommodate up to 2 wheelchairs.  Charters must be reserved in advance.  www.graylineofseattle.com  Step on guide service and tours available.  Ask for Judy Sprute.

Metro Bus - (206) 553-3000 Route 194 is closest to the hotel.  The buses can accommodate up to two wheelchairs at a time.  Each bus has a lift.  The buses run every 30 minutes starting at 6:19am and with the last return at 8:50pm.  2008 fares are $1.50 per person, must have exact change.  http://tripplanner.metrokc.gov/cgi-bin/itin_page.pl?resptype=U

Parking - Based on Washington State law, the City of Seattle allows on-street parking at no cost to holders of Disabled Parking Permits, which are issued by the State of Washington. The State Department of Licensing can issue disabled parking placards (either red-temporary or blue-permanent) and/or disabled parking license plates. Call the WA State Disabled Permit Program at (360) 902-3770, Option 5.

Metro ACCESS Paratransit Service - You must be found eligible for the ADA Paratransit Program before you can request rides. For more information, call Metro's Accessible Services office during regular weekday business hours at 206-263-3113. If you have to dial "1" first to reach that number, call 1-866-205-5001. TTY users should call the statewide relay at 711. You can also reach Accessible Services by fax at 206-263-3101 or by e-mail at accessible.services@kingcounty.gov. Visit our website http://transit.metrokc.gov/tops/accessible/accessvan.html

Services & Resources

Dining Options

The following is a list of dining options within 2 miles of the conference hotel, the Doubletree Hotel Seattle Airport. The following may be used as a helpful guide for your convenience.

(Inside the Doubletree Hotel Seattle Airport)

* SeaPorts Lounge 11am-1:30am
   Sandwiches, pizza and nachos
* Maxi’s Lounge (Friday & Saturday Only)

* Coffee Garden Restaurant 5am-10pm
   Casual American dining for breakfast, lunch, dinner and express buffet
* Room Service 6am-10pm full menu, 10pm-12am limited menu

* Latte Stand 5am-2pm
   Espresso, coffee, juice, soft drinks, muffins and cookies

Taco Bell                                                     0.05mi
18812 International Blvd.
Seatac, WA 98188

Denny’s                                                        0.1mi
18623 International Blvd.
Seatac, WA 98198

Sharps Roaster & Ale House                         0.2mi
18427 International Blvd.
Seatac, WA 98188

Thirteen Coins Restaurant                            0.5mi
18000 International Blvd.
Seatac, WA 98188

Spencer’s For Steak & Chops                       0.7mi
17620 International Blvd.
Seatac, WA 98188

Denny’s                                                        0.9mi
17206 International Blvd.
Seatac, WA 98188

IHOP                                                             1.2mi
20402 International Blvd.
Seatac, WA 98198

Subway                                                         1.8mi
21425 International Blvd.
Des Moines, WA 98198

Wheelchair & Scooter Rentals

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

Access Mobility Systems

http://www.accessams.com/ 
13011 Hwy. 99 
Everett, WA 98204 
(425) 353-6563 Fax: (425) 355-6159
 Toll Free: 1-800- 854-4176
e-mail: info@accessams.com

Scootaround
http://www.scootaround.com/locfinder.asp?PlaceName=Seattle

Call us toll-free at 888-441-7575

E-mail:info@scootaround.com

Absolute Mobility Center

http://absolutemobilitycent.reachlocal.com/

Tel: (425) 318-1390 Fax: (360_ 668-1543

Toll Free: 1-888-822-9407 

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 are need of one. The following may be used as a helpful guide for your convenience.

Senior Services
Senior Information & Assistance
2208 Second Ave, Ste 100
Seattle, WA 98121
Tel: 206-448-3110
Toll Free: 1-888-435-3377

Fax: 206-448-5748
TTY: 206-448-5025

Info@seniorservices.org

www.seniorservices.org

http://www.seniorservices.org/Documents/hha.pdf

  • All PCAs must be registered to attend the annual membership meeting.  A PCA will not be required to be a NAF member to receive the reduced NAF member meeting fee.  PCAs will be able to attend all sessions, including the Friday reception and Saturday banquet. This applies to family members/ friends or contracted PCAs or other persons needed to provide services.

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

Olympic Pharmacy, Gig Harbor
4700 Point Fosdick Dr NW
Gig Harbor, WA 98335-1706
Tel: (253) 858-9941

Kirks Medical
7131 Martin Way E
Olympia, WA 98516-5535
Tel: (360) 456-5475

 

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

Walgreen's (2.99 miles from the hotel)
Walgreen’s is open 24 hours a day, 7 days a week.
14656 Ambaum Blvd SW
Burien, WA 98166
Tel: (206) 901-1774

Bartell Drugs (2.19 miles)
The pharmacy is open from 9am to 9pm.
14227 Tukwila International Blvd
Tukwila, WA 98168
Tel: (206) 431-9639

Longs Drugs (2.13 miles)
15716 1ST Ave S
Burien, WA 98148-1211
Tel: (206) 243-4600