DISCLAIMER: The information provided in this article is for informational use only. NAF encourages all readers to consult with their primary care provider, neurologist, or other healthcare provider about any advice mentioned. Deciding whether to donate cerebral spinal fluid (CSF) is a very personal, but impactful decision. In the video Read More…
The NAF Facebook Group was established as a support group and social network for people with Ataxia, including their families, friends, caregivers, and anyone affected by Ataxia. With any social network, there is a risk of encountering scammers and spammers. We’d like to provide you with some information about how Read More…
NAF is excited to announce that we are beginning a feasibility study of a program to remove barriers to genetic counseling and testing. Eligible participants will receive genetic counseling at no-cost to them. After counseling, if the participant and genetic counselor determine that testing is the right decision, genetic testing Read More…
If you’ve been involved in research or read about research studies involving human participants, you’ve likely heard the terms “inclusion and exclusion criteria.” While the definitions of inclusion criteria and exclusion criteria seem fairly self-explanatory, it is important to understand some background on why these criteria are utilized. Let’s start Read More…
We want to tell you about an opportunity to participate in research that can improve clinical care for Ataxia! Did You Know? NAF actively recruits research participants for the natural history study on Ataxia, which is run by the Clinical Research Consortium for the Study of Cerebellar Ataxias (CRC-SCA). Their mission is Read More…
The health and safety of our community is our number one priority at NAF. We wanted to let you know that we are pivoting to a completely virtual 2022 Annual Ataxia Conference. We will no longer offer an in-person option. While we’re very disappointed that we do not get to Read More…
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Let’s chat about Clinical Trial Readiness with a focus on Ataxia. Clinical trials ensure that treatments are safe and effective before they gain approval for widespread use in humans. Clinical trials test new treatments and therapies including: new drugs, different use for an already approved drug, medical devices, new treatment/therapy Read More…
What does a placebo mean? A placebo is a simulated substance that has no therapeutic effect or active ingredients. Often, a placebo looks, feels, and tastes like other therapies being tested in the clinical trial. What is the placebo effect, and why is it important? https://www.youtube.com/watch?v=5RhG_ySxhDA Why are placebo-controlled trials Read More…
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…
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