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.