Joel Sutherland, Director of Development, National Ataxia Foundation (NAF)
Wednesday, December 7, 2022,
2:30-3:30 pm,
ASA Koffler Great Room & Zoom
This lecture was rescheduled from October 12.
Ataxia. It is a THIEF! First it will steal your balance, then your gait, and ultimately, your ability to walk. Then it will take your clear speech and slur it all up, people will think you’ve been drinking, and it will steal your ability to talk. Then, it will take your ability to swallow. Ataxia takes and takes until there is nothing left to take. Ataxia needs to be stopped, and increasingly it seems that we can stop it.
This thief, ataxia, is a brain disease that impacts the cerebellum, the portion of the brain that manages overall coordination. While most ataxia is hereditary, ataxia can also be acquired through head trauma or excessive drug or alcohol use. With tens of thousands of Americans living with ataxia, research by academia and industry has never been so robust. Just seven years ago there was only one genetic testing company for inherited ataxia, and costs exceeded $20,000. Today, there are nearly a dozen companies that provide more affordable testing. In addition, the number of pharmaceutical companies interested in ataxia has also multiplied.
As Director of Development for the National Ataxia Foundation (NAF), a non-profit based in Minnesota, Joel Sutherland works to generate funds as quickly as possible in support of its mission. As he will tell you, “money buys research and research finds answers.” Sutherland and the development team at NAF work with foundations, industry partners, major donors, individual donors, and more than 70 support group leaders and ambassadors across the country to generate funding, raise awareness and provide purposeful interaction for an isolated community. His conversation with ASA will discuss the rare disease, ataxia, and how the NAF and its partners are on the cusp of its first disease-modifying treatment.
Preview provided by Joel Sutherland
You can connect to Zoom either by using the following URL: https://zoom.us/j/95456511620?pwd=OC9GcnJRNmJpMTdXdXFhaUpCUkx4QT09 or by opening a browser to zoom.com/join and typing in Meeting ID: 954 5651 1620 and Passcode: 85747