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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There are two main categories of human clinical trials: (1) observational studies, and 2) interventional studies. Both types of clinical studies are essential to developing new therapies for rare diseases like Ataxia. There are multiple trials taking place right now for Ataxia. In this PrepRARE article, learn a little more Read More…
In 2018, the Gordon and Marilyn Macklin Foundation and NAF partnered on a critical project for the Ataxia community: A relaunch of the Clinical Research Consortium for the Study of Cerebellar Ataxias, better known as the CRC-SCA Natural History Study. The CRC-SCA is an ongoing clinical study that aims to Read More…
We are both happy (for her) and sad (for us) to announce the retirement of Sue Hagen, Research Services Director. We are deeply grateful for her 15 years of dedication to the Ataxia community. Her fierce advocacy for patient needs and commitment to acceleration of research efforts have been an Read More…
We’re excited to announce that NAF will award more than $850,000 in Ataxia research grants this year! This year’s funded projects will support research on 8+ genetic forms of Ataxia, from the most common to some of the rarest, as well as address shared disease pathways that could provide insights Read More…
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…
We are thrilled to inform you of an NAF-sponsored annual program called Ataxia Clinical Training (ACT). ACT has been developed for clinician-scientists committed to improving the lives of patients and caregivers affected with Ataxia. There is a shortage of well-trained specialists who are knowledgeable about clinical and scientific aspects of Read More…
As a non-profit organization, NAF’s strategic vision is lead by our Board of Directors. They are a dynamic group of individuals that volunteer their time and resources to guide NAF towards its mission of accelerating the development of treatments and a cure while working to improve the lives of those 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 now accepting applications for the Diverse Scientists in Ataxia Pre-Doctoral Research Fellowship. Applications must be submitted via proposalCentral by March 28, 2022. This award provides partial support for study and research and may be used to support pre-doctoral students who are pursuing dissertation research with an Ataxia-relevant theme. This is a two-year $50,000 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…
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