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Bill Nye the Science Guy is speaking at the 2024 Annual Ataxia Conference! Register now.  LEARN MORE!

2024 AAC Virtual Platform

May 31 - June 1, 2024

Live Stream Session Recordings

Photobooth

Check out some of the fun photos submitted using the virtual photobooth!

Agenda

A printable live-stream agenda is available for download here:  Virtual Live Stream Agenda

Please note: The printable agenda does not include the preconference Virtual Birds of a Feather sessions. 

Friday, May 31st

All times listed are ET.

8:30am – Daily Welcome
Andrew Rosen, NAF CEO
Bill Nye the Science Guy
Andrew kicks of the first morning welcoming you to Friday’s sessions. He will introduce Bill Nye to the stage to share his connection to Ataxia. Bill’s family is affected by SCA27B, a newly identified type of Ataxia. Join him on his journey with Ataxia.

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.

10:30am – Core Strengthening Workshop
Elizabeth Foss, OTR/L
Join this 60-minute core/trunk strengthening workshop utilizing tai-chi, proximal stabilization, and postural correction techniques.

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 – Assistive Technology & Strategies to Mitigate Speech and Swallowing Impairments
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. 

3:00pm – Core Strengthening Workshop
Elizabeth Foss, OTR/L
Join this 60-minute core/trunk strengthening workshop utilizing tai-chi, proximal stabilization, and postural correction techniques.

Saturday, June 1st

All times listed are ET.

8:30am – Daily Welcome & The Ebb and Flow of Drug Development
Joel Sutherland, Dana Mauro, and Wendy Agnese, PhD
Joel and Dana welcome you back to day 2 of the conference. Hear from Biogen’s Head of US Medical Rare Disease team on Drug Development.

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 Macy, Shelbi Davenport, Moderator: Sarah Pilato
This panel discussion, including people diagnosed with Ataxia, will discuss strategies for living better with Ataxia. 

1:00pm – Rehabilitation Strategies & Mobility Devices
Jennifer Keller, PT, MS
This session will review suggested exercises to promote optimal function and what you can do to make your everyday life more accessible. Keller 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 and 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
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 & Research Awards
Joel Sutherland, Lauren Moore, PhD

2024 AAC Exhibitors

The following companies, organizations, or institutions will have exhibit booths at the in-person event. Click the logo to visit their website to learn more about them.

Virtual Research Opportunity from Massachusetts General Hospital – Schmahmann Lab 

Social network analysis in ataxia patients: exploring correlations with quality of life and functional outcomes 

Eligible Participants:  People aged 18 or above with ataxia. 

What you will be asked to do: A series of questionnaires about your social circle (family, friends, health care providers) and mental health. This will take about 45 minutes to complete. This is voluntary, and you can stop at any time. There are no clear risks associated with participation. 

If you would like to schedule a time to participate in this virtual study, please email James Concepcion (jconcepcion2@mgh.harvard.edu). 

2024 AAC Sponsors

Thank you to our sponsors who supported this event!

Platinum Sponsor

Sponsors

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