Join us online for the largest Ataxia community gathering

March 10-13, 2021

Beginning at 12pm CST daily

Virtual Event

Days
Hours
Minutes
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Only $50 for exclusive access to all 4 fun-filled days of all your favorite Annual Ataxia Conference activities.

REGISTER TODAY

Come as you are to NAF's 2021 Annual Ataxia Conference!

We’re excited to host the 2021 conference 100% online, broadening the event’s reach and making it accessible to our global community. No masks required since you will be joining us from the comfort of your own home. (You can even come in your pajamas!)

Whether this is your first time attending AAC or your 64th, we welcome you to enjoy the informative sessions and engaging networking opportunities. See old friends, make new friends, and hear from the leading Ataxia experts. Researchers and clinicians will unmask more about Ataxia and the progress being made toward new therapies.

We’re looking forward to seeing you in March! View our Sneak Peek webinar to see how the virtual conference will work.

Sessions

We will have many great options for learning at the 2021 Annual Ataxia Conference. Below are the topics that will be covered in general or breakout sessions. Click the plus sign (+) next to the session title to read the description. 

Speakers: Dana Mauro and Joel Sutherland 

You registered to attend your first Ataxia Conference. Now what? Are you wondering where to begin? What the conference is all about? How to schedule your time? What information or sessions would be the most useful to you? Interested in networking and meeting others who have similar questions, then this session is for you. This session is aimed at helping anyone who may be looking for advice on how to maximize their time and get the most out of the conference. You will leave feeling more familiar with conference topics, events, and breakout sessions. You’ll be able to plan out a schedule and even build in some time to relax and have fun!

Speaker: Pravin Khemani, MD, FAAN

So you have been newly diagnosed with Ataxia, now what? This session will discuss what it means to be diagnosed with Ataxia and some next steps to consider, including finding care and support. You will learn about living with a progressive type of Ataxia, joining patient registries, and participating in research to help end Ataxia.

Speaker: Vikram Shakkottai, MD, PhD and Susan Hagen

Since the founding of NAF, research to determine the cause and cure for Ataxia has been an important part of our mission. In this session, you will learn about NAF’s current research initiatives and NAF grant awardees research results. Find out how you can participate in research and what is envisioned for the future of Ataxia research.

Speaker: Susan Perlman, MD

Pharmaceutical companies describe the drug development process as a “pipeline.” Now that we have emerging Ataxia medications “in the pipeline” – we need to know that that means. Dr. Perlman will take us through the process and help us understand how a rare disease fits into the model systems that pharmaceutical companies use to get a medication to the market.

Speaker: Marie Davis, MD, PhD

Basic background information on the strategy of gene therapies that are in development for treating various genetic forms of ataxia, as well as evidence so far on the safety and efficacy of these therapeutic strategies in related neurogenetic conditions

Speaker: Theresa Zesiewicz, MD, FAAN

Information about treatment for Ataxia has been constantly changing, especially in the last few years. So, what are your options? Learn about current medical treatments available for Ataxia, including medication therapy.

Speakers: Kyle Bryant, Carli Hanson, and Courtney Ng

In this session you will hear from community members that are single and have Ataxia. Listen in as they openly share their stories and the strategies, they use to have connections, support, and fun.

Speakers: Chuck and Ondie Mitchell, Matthew and Jeannette Viveiros, John and Dana Mauro

Do you or your spouse/partner have Ataxia? In this session you will hear from other couples on a similar journey. Listen in as they openly share their stories and the strategies they use to keep their relationships happy and strong.

Speakers: Kelsey Poor, Meghan McNally, Emily Todd, MS, CDC, and Huda Zoghbi, MD, PhD

This session is designed for prospective parents, families, or others who are interested in learning more about reproductive options.

Speakers: Kelly Rutledge, Mark Desa, and Letitia Diggs

In this session, the speakers with Ataxia will share their strategies to live and cope with Ataxia.

Speaker: Jeremy Schmahmann, MD, FAAN, FANA, FANPA

Learn about the latest from research on cognitive neuroscience of the cerebellum.

Speaker: Maneesha Finkle, LMSW

This presentation will be focused on insurance coverage and accessing needed care for individuals diagnosed with ataxia. Included, will be limitations and challenges in coverage of services and suggestions for coordinating needs appropriately. Specific areas that will be addressed include: genetic testing; therapies such as physical therapy, occupational therapy and speech therapy; durable medical equipment; home modifications; and applying for disability insurance.

Speakers: Kristin Barañano, MD PhD and David Lynch, MD PhD

This session will answer frequently asked questions about how to recognize Ataxia in children and the appropriate diagnostic pathway. The speakers will discuss the importance of achieving a diagnosis for those situations where specific treatments are available and guidelines for management even in the absence of a specific diagnosis.

Speakers: George “Chip” Wilmot, MD PhD and Matthew Bower, MS, LGC

There are hundreds of specific diseases that can cause Ataxia, so when a patient is diagnosed with “Ataxia” it is often just the beginning of a confusing journey to define which subtype they have. This session will explore this diagnostic journey and provide insights on what patients should expect when navigating it.

Speakers: Lori Shogren, Joel Sutherland, Stephanie Wilkins, and Mike DeRosa

In this session we will hear from Support Group Leaders Stephanie Wilkins and Mike DeRosa in addition to NAF Staff Lori Shogren and Joel Sutherland. They will discuss the various programs you can consider getting involved in and the impact your involvement has on others in the Ataxia community and advancing the mission of NAF.

These smaller breakout sessions are interactive discussions for smaller groups. 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, Parents, or Caregiver session.

SCA1
For individuals that have been diagnosed with Spinocerebellar Ataxia – Type 1. (SCA1)

SCA2
For individuals that have been diagnosed with Spinocerebellar Ataxia – Type 2. (SCA2)

SCA3
For individuals that have been diagnosed with Spinocerebellar Ataxia – Type 3. (SCA3)

SCA6
For individuals that have been diagnosed with Spinocerebellar Ataxia – Type 6.(SCA6)

SCA5, 7, and 8
For individuals diagnosed with Spinocerebellar Ataxia – Type 5, 7, or 8. (SCA5, 7, or 8)

All Other SCA’s, Episodic Ataxia, and DRPLA
For individuals that have been diagnosed with SCA other than SCA1, 2, 3, 5, 6, 7, or 8. Or those with Episodica Ataxia or DRPLA. If you do not have a diagnosis of hereditary Ataxia, please attend the Unknown without Family History session.

Friedreich’s Ataxia
For individuals that have been diagnosed with Friedreich’s Ataxia.

Unknown with Family History
For individuals that have been diagnosed with an unknown type of Ataxia that have family history.

Unknown without Family History, MSA, Sporadic, and Gluten Ataxia
For individuals who have been diagnosed with an unknown type of Ataxia that do not have a family history. Or those with MSA, Sporadic, or Gluten Ataxia.

Under Age 30 with Ataxia
For individuals that have any type of Ataxia and are under the age of 30. Attendees must be the person with Ataxia (no parents or partners please).

Parents
For parents with children affected by any form of Ataxia. This group will listen and share experiences. This will be a powerful time for everyone. The session will begin with identifying some expectations of the group members and addressing their issues/concerns.

Family Members without Ataxia (Other than parents, spouses, or partners)
For family members (siblings, children, etc.) of individuals with any form of Ataxia. Share your experiences and concerns. For the privacy of the issues talked about in this session we ask that those with Ataxia attend the BOF sessions for their type of Ataxia.

Spouses and Partners without Ataxia
For spouses and partners of individuals with any form of Ataxia. Share your experiences and concerns with other spouses and partners. For the privacy of the issues talked about in this session we ask that those with Ataxia attend the BOF sessions for their type of Ataxia.

Caregivers
For caregivers of individuals with any form of Ataxia. Share your experiences and concerns with other caregivers. For the privacy of the issues talked about in this session we ask that those with Ataxia attend the BOF sessions for their type of Ataxia.

Agenda At-a-Glance


     WEDNESDAY, MARCH 10
     12pm-4pm CST

12pm – 12:15pm
Welcome & Orientation

12pm – 4pm
Exhibits Hall + Networking

1pm – 1:30pm
AAC Newcomers Session

1:30pm – 2pm
Newly Diagnosed Session

2pm – 2:30pm
Geographical Networking Break

2:30pm – 3pm
Research – the Key to Unmasking Ataxia

3pm – 4pm
Welcome Reception

     
     THURSDAY, MARCH 11
     12pm-4pm CST

12pm – 4pm
Exhibit Hall + Networking

12pm  – 12:30pm
Keynote Session: Ataxia Drug Treatment Targets and Pipeline

12:30pm – 1pm
Gene Therapies for Ataxia 101

1pm – 1:30pm
Standards of Clinical Care for Ataxia

1:30pm – 2:20pm
Fitness & Wellness Networking Break

2:30pm – 3:00pm
-Single with Ataxia
-Married with Ataxia
-Family Planning Options

3pm – 3:20pm
Movement for Mood and Mental Health – Part 1

3:20pm – 4pm
Exhibitor Spotlight Session

     
     FRIDAY, MARCH 12
     12pm-4pm CST

12pm – 4pm
Exhibit Hall + Networking

12pm  – 12:30pm
Living and Coping with Ataxia

12:30pm – 1pm
Exciting New Developments in the Cognitive Neuroscience of the Cerebellum

1pm – 1:30pm
Ask a Social Worker: Insurance, Coverage, and Navigating Care

1:30pm – 2:20pm
Geographical Networking Break

2:20pm – 3:00pm
-Pediatric Ataxias
-Navigating the Diagnostic Journey
-Ataxia Support Groups and Other Opportunities to Get Involved with NAF

3pm – 3:20pm
Movement for Mood and Mental Health – Part 2

3:20pm – 4pm
Exhibitor Spotlight Session

     
     SATURDAY, MARCH 13
     12pm-5:30pm CST

12pm – 5pm
Exhibit Hall + Networking

12pm  – 12:15pm
Birds of a Feather Kick Off and Orientation

12:30pm – 2pm
Birds of a Feather Sessions

  • SCA1
  • SCA2
  • SCA3
  • SCA6
  • SCA5, 7, and 8
  • All Other SCA’s, Episodic Ataxia, and DRPLA
  • Friedreich’s Ataxia
  • AOA and Other Rare Recessives

2pm – 2:30pm
Movement for Mood and Mental Health – Part 1

2:30pm – 4pm
Birds of a Feather Sessions

  • Unknown with Family History
  • Unknown without Family History, MSA, Sporadic, and Gluten Ataxia
  • Under Age 30 with Ataxia
  • Parents 
  • Family Members without Ataxia (Other than parents, spouses, or partners)
  • Spouses and Partners without Ataxia
  • Caregivers

4pm – 4:20pm
Movement for Mood and Mental Health – Part 2

4:30pm – 5:30pm
Closing Ceremony, Awards, and Dance Party

Speakers

NAF invites world-leading Ataxia researchers and physicians to present at AAC. The 2021 Annual Ataxia Conference keynote speaker will be Dr. Susan Perlman, MD. Other speakers to be announced. 

Susan Perlman, MD

KEYNOTE SPEAKER
Neurologist
UCLA Neurological Services

Kristin Barañano, MD, PhD

Pediatric Neurologist
Kennedy Krieger Institute

Matthew Bower, MS, LGC

Certified Genetic Counselor
University of Minnesota

Kyle Bryant

Ride Ataxia Founder and Director
FARA

Marie Davis, MD, PhD

Neurologist
University of Washington

Mike DeRosa

Ataxia Support Group Leader
National Ataxia Foundation

Mark Desa

Ataxia Support Group Leader
National Ataxia Foundation

Letitia Diggs

Ataxia Support Group Leader
National Ataxia Foundation

Maneesha Finkle, LMSW

Clinical Social Worker
University of Michigan Ataxia Center

Sue Hagen

Research Services Director
National Ataxia Foundation

Carli Hanson

Community Member

Previn Khemani, MD, FAAN

Neurologist
Swedish Neuroscience Institute

David Lynch, MD, PhD

Pediatric Neurologist
University of Pennsylvania

Natalie Marnica

Certified Yoga Therapist

John and Dana Mauro

Ataxia Support Group Leaders
National Ataxia Foundation

Megan McNally

Community Member

Chuck and Ondie Mitchell

Community Members

Courtney Ng

Community Member

Kelsey Poor

Public Relations Manager
Novaspace/Spacefest

Andrew Rosen

Executive Director
National Ataxia Foundation

Kelly Rutledge

Community Member

Jeremy Schmahmann, MD, FAAN, FANA, FANPA

Neurologist
Harvard Medical School

Vikram Shakkottai, MD, PhD

Neurologist
University of Michigan Ataxia Center

Lori Shogren

Program and Services Director
National Ataxia Foundation

Joel Sutherland

Development Director
National Ataxia Foundation

Emily Todd, MS, CDC

Certified Genetic Counselor
University of Colorado

Matthew and Jeannette Viveiros

Community Member

Stephanie Wilkins

Ataxia Support Group Leader
National Ataxia Foundation

George Wilmot, MD, PhD

Neurologist
Emory University

Theresa Zesiewicz, MD

Neurologist
University of South Florida

Huda Zoghbi, MD, PhD

Neurologist
Jan and Dan Duncan Neurological Research Institute

Share and Promote 2021 AAC

We would love it if you would help us spread the word about the conference!  To make it easy, we’ve compiled all your Annual Ataxia Conference social media needs in one place.  Be sure to connect with us on our social media accounts and take a look at the hashtags, posts and images you can use to create a “buzz” around the conference.  Feel free to customize your posts so your networks can learn about your thoughts and excitement.

Follow us on social media

Share with your social media audience that you are part of Annual Ataxia Conference! Below you will find sample posts use. The conference hashtags are #2021AAC and #AtaxiaUnmasked.

LinkedIn and Facebook

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Twitter

Link to Social Banner

Instagram

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  • Counting down the days until 2021 Ataxia Annual Conference in March!  Join me.
  • Can’t wait for 2021 Ataxia Annual Conference.  Come experience the best in education and networking for the Ataxia community.
  • Join me with hundreds of others from our community.  Register now for 2021 Ataxia Annual Conference.

Virtual Exhibit Hall

Join us as an exhibitor and enjoy an array of opportunities. Contact Jon Wegman at jon@ataxia.org for more information. 

LEARN ABOUT EXHIBITING AT AAC >>

Already exhibiting?  Please download the following documents to help you get started.

Sponsors

Thanks to our partners below for their support of 2021 AAC! Stay tuned for announcement of additional partners.

Interested in sponsoring or exhibiting at our virtual event? Contact Joel Sutherland at joel@ataxia.org for more information. 

LEARN ABOUT SPONSORING AAC >>

FAQs

How much does registration cost?

$50. This fee will grant you access to all four days of the conference!

Does each person in my household need to register separately?

Each person that would like to interact on the virtual platform will need to complete their own registration with a unique email address. Only ONE event profile can be created per email address. There will be opportunities to attend special sessions specifically tailored to your interests and needs, chat with other attendees, and discuss topics important to you.

How do I join the conference on the day of the event?

Each registrant will receive an email with their unique login information and the link to join the conference in March. You will be able to login in advance to complete your profile and build your personal schedule. On the day(s) of the conference, you will use that information to login and join the fun.

Will there be social events at this virtual conference?

Yes! Even though we’ll be online, we will still offer plenty of fun ways to engage with other attendees and meet new friends. 

Event Policies

By registering for this event you agree to the following policies:

Privacy Policy

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 and Eventfinity’s privacy policies, including how to exercise your rights under GDPR.

Media Waiver

NAF intends to take photographs and video of this event for use in NAF news and promotional material, in print electronic, and other media, including the NAF website. By participating in the event, I grant NAF the right to use any image, photograph, voice, or likeness, without limitation, in its promotional materials and publicity efforts without compensation.

Code of Conduct

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, partners, 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, sexist. racist. or exclusionary jokes are not condoned at NAF Events. Participants violating these rules may be asked to leave the conference at the sole discretion of NAF.

Sponsor opt-in

I agree that NAF may share my contact details, along with other personal data that I provide in this registration form [and in pre-event surveys] with event sponsors, as listed in the Sponsors’ section of the event website, for the purposes of post-event follow-up communication. This consent is granted for one-off communication from each Sponsor.

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