National Ataxia Foundation

Session : NAF1201
NAF Update
Conference : 55th Annual Membership Meeting - Roundin Up A Cure To Give Ataxia The Boot
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A brief overview of past, current, and future activities of the National Ataxia Foundation.

Michael Parent, Executive Director

Session : NAF1202
Medications and Therapies for Ataxia
Conference : 55th Annual Membership Meeting - Roundin Up A Cure To Give Ataxia The Boot
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While there are no definitive medical treatments for most forms of ataxia, there are a number of medications that can relieve symptoms of this condition and others that hold promise for the future. Several ataxias are caused by known deficiencies in key substances such as vitamins or hormones that can be replaced to basically stop the disease and usually reverse the deficits. Treating infections, tumors or abnormal auto-immune reactions also can eliminate some of the symptoms of ataxia is so important to find.

Certain incurable ataxias can have potent symptomatic therapies that treat a variety of patient complaints. Using L-dopa to treat certain tremors and stiffness found in the SCAs is one example. Other examples include treating muscle spasms and stiffness with medications such as baclofen that improve walking and sleeping overnight. Also, very helpful is the reduction in abnormal eye movements that can be obtained through the use of medications that often are tried at a time until a person receives benefits. In addition, the episodic ataxias often respond to anti-seizure medications that may work so well that they erase the persons symptoms all together.

Finally, it seems that each year new therapies are proposed to help reduce the symptoms of ataxia in general. During this lecture we will take a close look at the various old and new therapies and how they may help those with ataxia.

Joseph Savitt, MD, PhD

Session : NAF1203
Move and Improve How Coordinative Training Helps Ataxia
Conference : 55th Annual Membership Meeting - Roundin Up A Cure To Give Ataxia The Boot
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The cerebellum is known to play a strong functional role in both motor control and motor learning. Hence, the benefit of physiotherapeutic training remains controversial for patients with cerebellar degeneration. We examined the effectiveness of a four-week intensive coordinative training for patients suffering from progressive ataxia due to cerebellar degeneration or degeneration of afferent pathways. Effects were assessed by clinical ataxia rating scales, individual goal attainment scores and computerized movement analysis. Significant improvements in motor performance and reduction of ataxia symptoms were observed in clinical scores after training and were sustained at follow-up eight weeks later. Patients with predominant cerebellar ataxia revealed more distinct improvement than patients with afferent ataxia. Patients were asked to continue coordinative training by a home training program. To evaluate long-term benefits and translation to real world function, we assessed motor performance and achievements in activities of daily life one year after the initial four-week training period. Despite gradual decline of motor performance and gradual increase of ataxia symptoms due to progression of disease after one year, improvements in motor performance and achievements in activities of daily life persisted. Our study provides evidence that coordinative training improves motor performance and reduces ataxia symptoms in patients with progressive cerebellar ataxia, enabling them to achieve personally meaningful goals in everyday life. Continuous training seems crucial for stabilizing improvements and should become standard of care.

Ludger Schols, MD

Session : NAF1204
Home Modification and AT in the Home
Conference : 55th Annual Membership Meeting - Roundin Up A Cure To Give Ataxia The Boot
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Attendees will learn about how to complete a home assessment to better determine accessibility needs. Attendees will also learn about simple and inexpensive to complex home modifications. The presentation will also cover how AT can be used in the home to make it more useable for a person with a disability. How to advocate for home modifications and disability laws will be briefly covered.

Naomi S. Hubert

Session : NAF1205
Affirming Yourself for Life's Challenges
Conference : 55th Annual Membership Meeting - Roundin Up A Cure To Give Ataxia The Boot
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Noted author and national motivational speaker, Janet Edmunson will address the compelling issue of how people and families dealing with ataxia can find meaning in their lifes challenges. Building on her own personal experience of caring for her husband through the progression of an atypical Parkinsons disease, Janet will encourage attendees to make the most of their situation, help them understand the difficulties they will face and teach them what they can do to achieve personal aspirations. Throughout, she presents a number of affirmations to uplift and inspire. Shell also weave in the new scientific research from the positive psychology field, which has applications for caregivers and care recipients.

Janet Edmunson, MEd

Session : NAF1206
Ataxia Investigators Meeting Review
Conference : 55th Annual Membership Meeting - Roundin Up A Cure To Give Ataxia The Boot
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Dr. Henry Paulson, NAFs Associate Research Director and the lead organizer of the Ataxia Investigator Meeting (AIM) will report on the highlights of the 4th AIM that took place just prior to this Annual Membership Meeting. From Tuesday evening to Friday afternoon over 100 ataxia researchers representing 12 countries met. At this meeting the latest developments in translational research on ataxia were presented by senior and selected junior investigators. The three primary goals for the AIM are: 1) identify common disease mechanisms; 2) explore therapeutic strategies; and 3) help establish future leaders of ataxia research. Dont miss hearing about the accomplishments of this important meeting.

Henry Paulson, MD, PhD

Session : NAF1207
Spinocerebellar Ataxia: Working Towards a Treatment
Conference : 55th Annual Membership Meeting - Roundin Up A Cure To Give Ataxia The Boot
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Current perspectives on therapeutic strategies for SCA1 and the recent results of therapeutic trials in animal models of the disease.

Puneet Opal, MD, PhD

Session : NAF1208
The Heart in Friedreich's Ataxia: What Happens and Why Does It Matter
Conference : 55th Annual Membership Meeting - Roundin Up A Cure To Give Ataxia The Boot
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This presentation will be directed at patients and parents, and will discuss how the heart is affected in Friedreichs Ataxia. We will also cover novel therapies for FA, and what important clinical questions need to be answered to help patients with this disorder.

R. Mark Payne

Session : NAF1209
Genetics and Family Planning
Conference : 55th Annual Membership Meeting - Roundin Up A Cure To Give Ataxia The Boot
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While genetic testing sometimes provides answers, it can also raise some very difficult questions. During this presentation, we will briefly review the inheritance patterns of ataxia. We will then discuss issues related to family planning including carrier testing, predictive testing, prenatal testing, and pre-implantation genetic diagnosis.

Matthew Bower, MS, CGC

Session : NAF1210
Stem Cell Research for Ataxia
Conference : 55th Annual Membership Meeting - Roundin Up A Cure To Give Ataxia The Boot
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Provided a clear description of different stem cells including the important type for ataxia research right now, induced pluripotent stem cells (iPSC) from skin cells.

Helene Puccio, PhD