Blog

How Does a Clinical Trial Work?

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…

EL-PFDD Meeting

We’re excited to announce that NAF and Cure DRPLA will Host an Externally-Led Patient-Focused Drug Development Meeting for Polyglutamine Spinocerebellar Ataxias and DRPLA! Save the Date! September 25, 2020 10am-3pm EST Virtual Meeting What is an Externally-Led Patient-Focused Drug Development Meeting? An Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting gives the FDA and other Read More…

NAF Statement on Racism and Social Injustice

We have been shaken, saddened, and angered by the death of George Floyd here in NAF’s hometown of Minneapolis. We have also been strengthened by the peaceful anti-racism protests that have swept the country, and the necessary conversation that is occurring. The National Ataxia Foundation condemns all forms of racism and social Read More…

What’s the Deal with Ataxia Research Right Now?

Guest Author: Tasha Kaiser, Clinical Research Coordinator, University of Michigan Hello, with a big friendly wave of the Michigan mitten! My name is Tasha Kaiser, and I am the Clinical Research Coordinator for the University of Michigan Ataxia studies. I know that so many of you in the Ataxia community Read More…

Certainty In Uncertain Times

Author: Joel Sutherland, Development Director Uncertain times? I don’t think so! Granted, we are not sure if summer camps will be open for the kids in the next several weeks. We are not sure when scheduled weddings will take place with more than 10 people in attendance or when family Read More…

Light at the End of the Tunnel

Author: Sue Hagen, Research Services Director I heard a story about a father and his son out on a bike ride who came upon a drainage tunnel that ran underneath the highway. They decided to get off their bikes and go exploring. They entered the tunnel and started walking when Read More…

NAF Attends First Ever Virtual Hill Day

Author: Lori Shogren, NAF Community Program and Services Director The first ever virtual Hill Day on March 18th was a tremendous success! This event was organized by the Alliance for a Stronger FDA which is an advocacy organization that NAF is proud to be a member of. For Alliance members Read More…

8 Things to Do While You Are Social Distancing

Guest Author: Dr. Pravin Khemani Swedish Neuroscience Institute; NAF Medical and Research Advisory Board Member Hi folks! Social distancing is not social disengagement, so please stay as connected with your near and dear ones as possible…safely of course. Recruit your children or your tech-savvy friends and family to show you Read More…

2020 NAF Funded Research

We’re excited to announce that NAF will award $940,000 in Ataxia research grants this year! NAF’s Board of Directors approved funding for 25 Ataxia research grants in 2020. Nearly 60 applications were reviewed by a team of the the world’s top Ataxia researchers. They selected the highest quality Ataxia research grant applications Read More…

NAF Office is Working Remote

NAF staff will be working remotely until further notice, doing our small part in slowing the spread of the COVID-19 virus. What this means is business as usual, just remote: In-person meetings for our staff (external and internal) will be rescheduled as phone/video calls. NAF staff will work from their Read More…

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