Bill Nye the Science Guy is speaking at the 2024 Annual Ataxia Conference! Register now. LEARN MORE!
Bill Nye the Science Guy is speaking at the 2024 Annual Ataxia Conference! Register now. LEARN MORE!
We invite you to be part of the largest Ataxia gathering in the world to learn, share, network, and have fun at this year’s Annual Ataxia Conference: Partnering for Progress!
Once again, AAC will be a hybrid event with sessions and events happening both in-person and virtually.
We will also have special celebrity guest Bill Nye the Science Guy!
Choose how you’d like to join us at the 2024 Annual Ataxia Conference! In-person registration covers admission to all functions at AAC, including general sessions, a welcome reception, Birds of a Feather sessions, the exhibitor hall, and the Saturday banquet dinner as well as complimentary access to the virtual page. Virtual registration covers access to the online page which will include live-streamed general sessions and virtual birds of a feather sessions.
*Regular registration will end 5/24/24. After that, on-site registration is available for $400.
No refunds of registration fees for cancellations after 5/17/2024. Registration at the door is not recommended.
The 2024 Annual Ataxia Conference will be held at Caribe Royale Orlando at 8101 World Center Drive in Orlando, FL.
Guests of Caribe Royale can enjoy a luxurious outdoor swimming pool and hot tub, plus dining at the resort’s 7 different establishments. Please allow yourself extra time to familiarize yourself with the layout of the hotel and area.
NAF will offer a discounted group rate on a first-come, first-served basis. The group rate will be available while inventory lasts until May 6, 2024.
Non-ADA rooms must be booked directly through Caribe Royale. Starting on 1/9/2024, standard room reservations can be made online or by phone.
To book online, go to book.passkey.com/gt/219570682?gtid=d0de043c37f7d81b98831b460d43f77b.
To book by phone, call (800) 823-8300 and request our special rate under the group name “National Ataxia Foundation.”
ADA Room Reservations
The hotel offers a resort shuttle that drives on a loop around the property and can take you wherever you need to go. Each property building has a shuttle stop outside where you can wait to be picked up or you can use the QR code on the sign to call the shuttle to your location. This shuttle is wheelchair accessible.
Hotel Information
If you need ADA equipment you are encouraged to bring those items with you or make arrangements to rent equipment locally. NAF is unable to provide ADA equipment. Be sure to rent or request any needed equipment from Caribe Royale in advance to be accommodated based on availability. The width of the bathroom door in the standard sleeping rooms is 32-33’’
The service dog relief areas at the Caribe Royale are located behind Tower 3 and between the Convention Center and Villa Tower 4. Please pick up after your service animal.
Valet parking and self-parking are both available. Valet parking is $25 per day and self-parking is $15 per day.
Self-Parking Rates
Valet Parking Rates
Internet access in your guestroom is included in the resort fee for up to 4 devices.
Whether you’re a theme park enthusiast, bird watcher, foodie, water sports fanatic, sun worshipper, arts patron, serious shopper or anything in between, you’re always welcome in Orlando. The possibilities are endless. And wonder is always within reach. It’s the getaway you deserve — and you’ll only find it in Orlando.
Local Airport:
Orlando International Airport (MCO)
One Jeff Fuqua Boulevard
Orlando, FL 32827
Please visit www.visitorlando.com for a complete list of attractions and planning information.
In Orlando the average high temperature in May is 88 degrees Fahrenheit and the average low temperature is 69 degrees Fahrenheit.
The following information can be used as a guide as you plan your stay and transportation needs in Orlando. 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.
Lift Equipped Group Shuttles
To get information regarding accessible shuttle transportation please contact the shuttle companies directly that are found on the Orlando International Airport website https://www.orlandoairports.net/parking-transportation/.
Taxis
Accessible taxi services are available at all three terminals. Taxi pickup spots can be found at:
Terminal A – Ground Transportation Curb (Level 1) in spaces A22-A25
Terminal B – Ground Transportation Curb (Level 1) in spaces B30-B34
Terminal C – Arrivals Curb (Level 6)
Those in need of wheelchair accessible taxis can check out this resource: https://www.comfortride.info/wheelchair-taxi.html
Ride Share Services
Uber and Lyft 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. Ride share pickup spots can be found at:
Terminal A – Level 2
Terminal B – Level 2
Terminal C – Level 6
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 resources page at https://www.ataxia.org/general-references/ and select the “Accessible Travel & Recreation” option. You will be directed to a list of links 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 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 Orlando International Airport (MCO) to assist travelers with disabilities can be found at https://www.orlandoairports.net/getting-around-mco/accessibility/
TSA Cares
TSA Cares is a toll-free helpline for passengers with disabilities and medical conditions that provides assistance in preparing for the airport security process.
Contact:
Call 72 hours ahead: 1-855-787-2227
Weekdays 8am to 11pm ET
Weekends/holidays 9am to 8pm ET
Federal Relay: 711
The distance from the gates to baggage claim and ground transportation varies greatly depending on which airline you are arriving on – Incoming Jet Blue and International flights are likely to be the greatest distance to baggage claim. 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. MCO recommends arriving 2-3 hours prior to your departure to have ample time to check bags, get through TSA security, and find your gate.
Many services such as skycaps, sighted guides, and wheelchairs are provided by the airlines. Please contact your airline to reserve a wheelchair.
MCO Sunflower Lanyard Program
The Sunflower Lanyard Scheme® was originally created to act as discreet identification that the wearer, or their companion, has a hidden disability and might require additional assistance.
Wearing a sunflower lanyard enables passengers to self-identify to staff that they have a hidden disability. It is a voluntary program and passengers are not required to participate. Passengers may choose to disclose their disability on the card, but they do not have to. They may also have a contact name and phone number on the card, which would be helpful if they are lost or are separated from their party. Airport staff are trained to recognize the lanyards and to be understanding if additional help is needed. Lanyards are available in the information booths on the Departures Level, prior to the security checkpoint. Wearing a lanyard DOES NOT guarantee fast tracking through security or any preferential treatment. Passengers are still required to arrange special assistance with their airlines and TSA Cares.
The following information can be used as a guide as you plan your stay in Orlando. 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.
K&M Mobility Scooter Rentals
407-363-7388
www.km-rentals.com
Scootarama
407-897-6839
www.scootarama.com
ScooterBug Rentals
800-726-8284
www.scooterbug.com
Walker Mobility Scooter Rentals
407-518-6000
www.walkermobility.com
Orlando Medical Rentals
877-356-9943
www.orlandomedicalrentals.com
Buena Vista Rentals
407-331-9147
www.buenavistascooters.com
Scootaround Inc
(888)441-7575
scootaround.com
Florida Van Rentals
866-682-7895
floridavanrentals.com
Mobility Works
877-275-4915
mobilityworks.com
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.
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.
CVS Pharmacy
5908 W Iro Bronson Memorial Hwy
407-390-9431
www.cvs.com
Walgreens
12650 International Dr. S
407-238-4677
www.walgreens.com
Family Services Department
Office of Disability Concerns/ADA
2100 E. Michigan Street, 2nd Floor
Orlando, FL 32806
Email: OfficeOnDisability@ocfl.net
Phone: (407) 836-6568
Conference Deductions by attendees
http://www.irs.gov/pub/irs-irbs/irb00-19.pdf
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.
Your data privacy and security are important to us. When you register for this event, NAF will process your data in accordance with our legitimate interests for hosting an industry event and for being a community-based organization. Please review NAF’s privacy policy, including how to exercise your rights under GDPR.
NAF intends to take photographs and video of this event for us in NAF news and promotional material, in print, electronic, and other media, including the NAF website. By participating in the event, you grant NAF the right to use any image, photograph, voice, or likeness, without limitation, in its promotional materials and publicity efforts.
We value the participation of each member of the community and endeavor to deliver an enjoyable and fulfilling experience. Conference participants are expected to conduct themselves with integrity, courtesy, and respect for others and maintain the highest level of professionalism at all conference programs and events, whether officially sponsored by NAF or not. All attendees, speakers, organizers, volunteers, vendors, and staff at any NAF event are required to observe the following Code of Conduct:
NAF is dedicated to providing a harassment-free conference experience for everyone, regardless of gender, sexual orientation, disability, physical appearance, body size, race, or religion. We do not tolerate harassment of conference participants in any form. All communication should be appropriate for a professional audience including people of diverse backgrounds and cultures. Sexual language and imagery are not appropriate for the conference. Be kind to others. Do not insult or defame participants. Harassment in any form, such as sexist, racist, or exclusionary jokes are not condoned at NAF events. Participants violating these rules may be asked to the leave the conference at the sole discretion of NAF.
The purpose of Birds of a Feather sessions is to provide a safe space for patients and family to connect with each other and expert facilitators. We welcome approved clinical observers. To ensure that the limited time in these sessions is fulfilling this valuable purpose to attendees we ask that all attendees agree to this Code of Conduct.
As an Ataxia patient organization, our mission is to find treatments and cures for the Ataxias. We believe creating a collaborative research environment that promotes diversity, equity, and inclusion for all our stakeholders and partners is essential to achieving this mission. We are committed to equality of opportunity and insist that all those engaging in our community are treated with dignity and respect. We will ensure this at AAC by fostering an environment that embraces diversity and inclusion and celebrates the contributions of all.
Infectious disease outbreaks, such as COVID-19 and Monkey Pox, can be unexpected and evolving situations. We will monitor any health emergency situations closely. At present, we are planning and preparing for an in-person conference. We do have contingency plans that will allow a quick response to changing conditions. These include postponing the event or pivoting to a fully virtual conference. We recommend that attendees do not book non-refundable travel. In addition, health safety precautions may be implemented at the discretion of NAF. Examples of safety precautions are social distancing and requiring face masks. If safety precautions are implemented, you agree to abide by them while attending conference functions. committed to equality of opportunity and insist that all those engaging in our community are treated with dignity and respect. We will ensure this at AAC by fostering an environment that embraces diversity and inclusion and celebrates the contributions of all.
I agree that NAF may share my contact details, along with other personal data that I provide in this registration form with event sponsors, as listed in the Sponsors section of the event website for the purpose of post-event follow up communication. This consent is granted for one-off communication from each Sponsor. To opt-out, email your request to naf@ataxia.org.
We understand that registration and travel costs can be too great of a financial burden for some. We want everyone to have an opportunity to experience AAC. NAF will be awarding a limited number of travel grants for the in-person event and registration scholarships for the virtual event to those with Ataxia who have a financial need. Adults or children with Ataxia are eligible to apply.
Virtual Scholarship applicants will be notified of their application status within 2 weeks of submission.
Travel Grants and Scholarships are made possible by generous donors to NAF. Thank you for helping us cover a portion of the costs for those in need!
Times listed are ET. Sessions available for virtual and in-person attendees.
Click on an agenda item to view the session description.
Session Description
These smaller breakout sessions are interactive discussions for smaller groups by Ataxia type or other affiliation. Choose the session that best fits your situation. If you have Ataxia, choose the session for your type of Ataxia. If you are not sure of your type of Ataxia, attend the Unknown With Family History or the Unknown Without Family History session. If you do not have Ataxia yourself, try the Spouses and Partners Without Ataxia, Family Members Without Ataxia, or a Parents sessions.
Please note: Mature subject matter may be discussed. These sessions are not intended for children aged 12 and under.
Sessions:
Session Description
These smaller breakout sessions are interactive discussions for smaller groups by Ataxia type or other affiliation. Choose the session that best fits your situation. If you have Ataxia, choose the session for your type of Ataxia. If you are not sure of your type of Ataxia, attend the Unknown With Family History or the Unknown Without Family History session. If you do not have Ataxia yourself, try the Spouses and Partners Without Ataxia, Family Members Without Ataxia, or a Parents sessions.
Please note: Mature subject matter may be discussed. These sessions are not intended for children aged 12 and under.
Sessions:
All times listed are ET. Sessions available for in-person attendees only.
Click on an agenda item to view a detailed schedule with session descriptions.
Come here to check in to receive your attendee badge (required to be worn at all event functions) and attendee gift bag.
For In-Person Attendees Only
Visit the exhibit hall to learn about research opportunities and other vendors.
For In-Person Attendees Only
Join us to learn about what to expect and how to plan your days.
For In-Person Attendees Only
All times listed are ET.
Click on an agenda item to view a detailed schedule with session descriptions.
Visit the exhibit hall to learn about research opportunities and other vendors.
For In-Person Attendees Only
Room: Caribbean 1-5
Live-streamed for the virtual audience.
8:30am – Daily Welcome
Andrew Rosen, NAF CEO
Bill Nye the Science Guy
9:00am – Newly Diagnosed & Prepping for a Neurologist Visit
Vikram Shakkottai, MD, PhD
Receiving a diagnosis of Ataxia can be overwhelming. There is a lot to learn, but you are not alone. This session will help you learn how to take charge of your care plan.
Birds of a Feather are smaller break-out sessions arranged by type of Ataxia or other affiliation, such as being a spouse or partner that does not have Ataxia. These sessions are group discussions facilitated by an Ataxia expert. The options listed are subject to change. Room assignments will be noted in the printed program provided onsite.
*In-person only*
Room: Caribbean 1-5
Elizabeth Foss OTR/L
60-minute core/trunk strengthening workshop utilizing tai-chi, proximal stabilization, and postural correction techniques.
Room: Caribbean 1-5
Live-streamed for the virtual audience.
1:30pm – Medications & Diet
Liana Rosenthal, MD, PhD
There are several medications and dietary changes that can be used to address symptoms caused by Ataxia. Dr. Rosenthal will review things that her patients have found helpful. Use these ideas to discuss options with your physician.
2:00pm – Speech, Swallowing & Assistive Technology Devices
Allison Hilger, PhD
Speaking and swallowing can become more difficult as Ataxia progresses. Dr. Hilger will share strategies, technologies, and exercises to help you improve your speech and swallowing.
Birds of a Feather are smaller break-out sessions arranged by type of Ataxia or other affiliation, such as being a spouse or partner that does not have Ataxia. These sessions are group discussions facilitated by an Ataxia expert. The options listed are subject to change. Room assignments will be noted in the printed program provided onsite.
*In-person only*
Room: Caribbean 1-5
Elizabeth Foss OTR/L
60-minute core/trunk strengthening workshop utilizing tai-chi, proximal stabilization, and postural correction techniques.
For In-Person Attendees Only
Room: Caribbean 1-5
All registered conference attendees are welcome to attend. Admittance to this event and the light appetizers that will be served are included in your registration fee. A cash bar will be available. You are encouraged to prepare contact cards to distribute at this event. Contact cards should only include information you wish to distribute. Information on contact cards may include your name, email address, state, and diagnosis/affiliation. Repeat attendees are encouraged to welcome a First-Time Attendee.
All times listed are ET.
Click on an agenda item to view a detailed schedule with session descriptions.
Visit the exhibit hall to learn about research opportunities and other vendors.
For In-Person Attendees Only
Room: Caribbean 1-5
Live-streamed for the virtual audience.
8:30am – Daily Welcome
Joel Sutherland, NAF VP of Development
Dana Mauro
8:45am – Insight from the Social Worker
Lauren Zelouf, MSW, LCSW
What is the role of the social worker, when would you go to a social worker for help/what can you expect out of this interaction, and what supportive resources are available in your area.
9:15am – Palliative Care Approach to Ataxia
Jocelyn Jiao, MD
Palliative care is a medical specialty that focuses on matching the values and goals of the patient to the treatment plan. It seeks to address all forms of suffering (physical, psychological, spiritual, practical) with the use of an interdisciplinary team and tries to facilitate having more good days than bad. This approach can be especially helpful for patients and families living with Ataxia.
9:45am – Neuropsychology of Ataxia
Aaron Ritter, PhD
In this talk Dr. Ritter will review the anatomy of the cerebellum and why changes in the cerebellum lead to cognitive and behavioral symptoms.
10:15am – Home Modifications & ADL Independence
Elizabeth Foss, OTR/L
Strategies to increase ADL independence through various home modifications and use of adapted equipment.
10:45am – Living with Ataxia Panel Discussion
Liam Dougherty
Kory Tabor
Shelbi Davenport
Moderator: Sarah Pilato
This panel discussion, including people diagnosed with Ataxia, will discuss strategies for living better with Ataxia.
Room: Caribbean 1-5
Live-streamed for the virtual audience.
1:00pm – Rehabilitation Strategies & Mobility Devices
Amy Bastian, PT, PhD
This session will review suggested exercises to promote optimal function and what you can do to make your everyday life more accessible. Dr. Amy Bastian will discuss safe mobility strategies as well as present a variety of devices and strategies that can improve mobility.
1:45pm – Genetic Testing & Family Planning
Meron Azage, CGC
Jessica Oberlin
As with any hereditary disease, genetics are often of utmost importance to those with ataxia and their families. In this session a genetic counselor will discuss the role genetics plays in most ataxias and the importance of working with a care team when someone at risk chooses to be tested. Genetic testing can help inform decisions around family planning, healthcare and lifestyle choices, and professional and financial planning. A confirmed genetic diagnosis is also often a requirement for participation in clinical trials.
One option for family planning will be discussed by an Ataxian who, along with her husband, chose to go through preimplantation genetic diagnosis along with in vitro fertilization. Their difficult but ultimately successful journey will be presented, with time set aside for questions.
3:00pm – A Bird’s Eye View Research Update
Lauren Moore, PhD
Celeste Suart, PhD
Learn about the latest happenings in Ataxia research.
3:45pm – Information, Connection, and Community: Services Offered by NAF
Celeste Suart, PhD
NAF offers a variety of programs to the Ataxia community. We’ll bring you up to speed on all the different things that we can do for you.
4:30pm – Closing Remarks
Joel Sutherland
Lauren Moore, PhD
For In-Person Attendees Only
Room: Celebrity 1-5
What better way to end the 2024 AAC than with a Banquet! We look forward to a wonderful dinner together and a fun evening of socializing. When you arrive at the conference, please make sure you receive your name badge at the registration area if you plan to attend. The cost of the banquet is included in your registration fee, so you don’t want to miss it! Beverages will be available at a cash bar. The banquet includes a buffet dinner. Seating will begin promptly at 7pm. There will not be assigned seating.
Birds of a Feather are smaller break-out sessions arranged by type of Ataxia or other affiliation, such as being a spouse or partner that does not have Ataxia. These sessions are group discussions facilitated by an Ataxia expert. The Birds of a Feather options at the 2024 Annual Ataxia Conference are listed below:
Below are the topics that will be covered in general or breakout sessions.
Schedule is subject to change.
NAF invites world-leading Ataxia researchers and physicians to present at AAC. Check out our lineup of industry experts!
Special Guest
Community Member
Community Member
Community Member
Community Member
NAF Chief Scientific Officer
Community Member
NAF Community Services Coordinator
NAF Chief Executive Officer
NAF Patient Engagement Manager
NAF VP of Development
We’re looking for partners to support 2024 AAC and help us bring this impactful program to the Ataxia community! Thank you to our sponsors who have already committed to supporting this event!
Want to help bring this important resource to the Ataxia community? Sponsor our event! Contact Joel Sutherland at joel@ataxia.org for more information.
AAC attendees enjoy visiting the Ataxia Marketplace to learn about products, services, Ataxia clinics, and research opportunities. For our hybrid event, we have in-person and virtual-only exhibit packages available.
Contact Sarah Pilato at sarah@ataxia.org for more information.
If you have other questions about AAC, please contact Sarah Pilato at sarah@ataxia.org for more information or call us at 763-553-0020.
Our generous donors help us fund promising Ataxia research and offer support services to people with Ataxia. Your gift today will help us continue to deliver on our mission to improve the lives of persons affected by Ataxia.
Join for FREE today! Become a part of the community that is working together to find a cure. As a member you will receive access to the latest Ataxia news with our e-newsletter and Generations publication.
