NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
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What is an Informed Consent Form (ICF)? Informed Consent Forms are important aspect of a clinical trial. An ICF is a document that provides a potential clinical trial participant information about the clinical trial and any risks there may be in participating. The goal behind the ICF is to present Read More…
Last updated: February 2021 The coronavirus (COVID-19) pandemic is affecting communities worldwide. The health and safety of the Ataxia community is a priority at NAF. We have consulted with our Medical and Research Advisory Board, infectious disease specialists, the World Health Organization, and the Centers for Disease Control and Prevention (CDC) Read More…
Why Is Genetic Testing Important for Ataxia Research? Genetic testing plays a pivotal role in Ataxia research. This is due to the ability of genetic testing to pinpoint specific genetic mutations associated with different forms of the condition. By identifying these genetic variations, researchers can begin to research the underlying Read More…
What Are the Benefits and Limitations of Ataxia Genetic Testing? Benefits Genetic testing offers a range of valuable benefits to individuals and society. First of all, genetic tests can tell you if you are more likely to get certain diseases and conditions, which can help doctors catch them early and Read More…
Genetic Testing for SCA27B SCA27B, one of the newest identified forms of Hereditary Ataxia, is anticipated to be a highly prevalent type of Ataxia. Currently, there are limited options to receive a CLIA-certified genetic test for SCA27B. This article has information about how to access SCA27B testing in the United Read More…
How can genetic testing help me in managing my Ataxia condition? As the adage goes, knowledge is power. Knowledge gained through genetic testing can be difficult to process. Many people can be hesitant to have genetic testing done. They may not be sure how they will process this knowledge. At the Read More…
Guest Author: Movement Disorder Policy Coalition Movement disorders such as Ataxia, Parkinson’s, Huntington’s, and tardive dyskinesia can affect every aspect of a person’s life. That includes the ability to work, travel, exercise, engage in leisure activities and interact with friends and family. But wise policymaking can help these people continue Read More…
Author: Lori Shogren, Community Program and Services Director A Note About the 2021 Annual Ataxia Conference We know how valuable it is for those living with Ataxia and their caregivers to come together in person at our annual conference to gain strength from shared experiences. The current COVID-19 pandemic necessitates Read More…
Guest Author: Amber Trzeciak, Cadent Therapeutics Clinical trial phases can be a confusing concept to understand. The purpose of clinical trials is to determine how a drug or device (intervention) will interact with a human being. Trials are regulated by our governmental agency the FDA (US Food and Drug Administration). Read More…
Author: Andrew Rosen, Executive Director Hello Ataxia Community: As I sit at my desk on this Friday afternoon, I am amazed that it was less than one week ago that NAF, on the strong and wise counsel of our Medical and Research Advisory Board (MRAB), made the difficult decision to Read More…
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