NextGen ALS is stepping out from under the umbrella!
When you think of an umbrella, you think of a comfortable place to stay dry during a storm… a place of protection and safety. When NextGen ALS was first formed in 2020, we established ourselves as an initiative under the umbrella of Project ALS, an established 501(c)(3) out of New York. We chose to set ourselves up under Project ALS because they have a proven track record of aggressively pushing toward effective treatments for different forms of ALS, and because they have a history of being able to bring the right people and organizations together to collaborate toward a common goal. These are some of the primary characteristics that perfectly align with our mission: To raise funds for targeted research toward developing treatments and cures for genetic forms of ALS.
Since that time NextGen ALS has grown to a point where it makes sense for us to step out from under the umbrella of Project ALS. Over the past several years we’ve significantly expanded and advanced our fundraising team, our research team, and our first Familial ALS treatment.
Since 2020 we’ve expanded our reach to include many families in different parts of the US with genetic forms of ALS. Although NextGen ALS was started by the Weber Family in Northeast Wisconsin, we’ve expanded through our social media and outreach efforts to include over ten families with genetic forms of ALS around the Midwest and the East Coast of the US. These efforts have allowed us to increase our fundraising efforts from only two primary fundraising events per year to over half a dozen and counting.
We’ve also expanded our research team to increase our efforts and speed the development of Genetic ALS treatments. When we began these efforts our collaborative research team included Weill Cornell Medicine and Ionis Pharmaceuticals. In the years since that time, we’ve expanded this team to include Columbia University’s Department of Neurology, n-Lorem, the National Institute of Health (NIH), and several other key contributors. This has allowed us to very effectively progress the development of a novel treatment for ALS using Antisense Oligonucleotides (ASOs) at an extremely rapid pace.
Lastly, our collaborative research team has made massive strides in advancing our first novel treatment for Familial ALS. Using ASOs, our research team has moved the needle on this treatment faster than we could have ever imagined. This is primarily because of their willingness to collaborate and share information and resources, dramatically improving the effectiveness of their individual research efforts. Because of the passionate devotion and collaborative efforts of this team, we expect to receive FDA approval for human trials of an effective Familial ALS treatment in early 2024!
Because of all these significant advancements, and the growth that we’ve experienced as an organization, we’re proud to announce that as of January 1, 2024, NextGen ALS is a fully independent registered 501(c)(3) nonprofit organization. We’ve developed a very comprehensive and well-rounded board and corporate team, and we have several key advisory boards to support our efforts and mission. We will always be grateful to Project ALS for all their support over the past several years, and we will continue coordinating with them as we move forward, but this transition will allow us to be more nimble as an organization, and to more efficiently pursue our goals of saving the next generation of families with genetic forms of ALS.
As always, we want to extend a big thank you to all our generous supporters who’ve helped us accomplish so much so quickly, and we look forward to continuing this important work for generations to come.
Thank you from the bottom of our hearts,
Your Friends at NextGen ALS