History & Timeline
1996 & 1999
Art Weber was diagnosed with and passed away from Genetic ALS.
We suspect that Art first showed symptoms of ALS at age 55, but because so little was known about ALS at the time, his condition was misdiagnosed. As a result of this, Art underwent a number of unnecessary surgeries, but in 1996, at age 69, he was officially diagnosed with ALS.
Art never knew that the form of ALS that took his life was hereditary, and that it would affect his family for generations to come.
2000
Weber family discovers that they carry a genetic form of ALS.
Before Art’s death his neurologist suggested that he give blood to Northwestern for ongoing research. Dr. Siddique notified the family in 2000 that they are a genetic family. This meant all 9 of Art’s children had a 50/50 chance of carrying the same gene, and inheriting ALS. They were still unaware of what gene deformity was causing their form of Genetic ALS.
2002 & 2018
Peggy Driessen was diagnosed with and passed away from ALS.
In 2002, at age 42, Peggy Driessen was diagnosed with the same genetic strain of ALS that took her dad, Art Weber, just years earlier.
In 2018, after an 18 year battle with ALS, she passed away from ALS at the age of 60. Her light continues to shine through in our efforts to this day.
2007 & 2008
“Fishing for a Cure” events.
The Weber Family hosted the "Fishing for a Cure" events in 2007 and 2008. This was held at the VFW park in Hollandtown, Wisconsin. It took two huge tents to hold the raffle items, food and refreshments for the massive crowd. They raised $245,000 between the two events for ALS research. Everyone who helped was a volunteer and most of the organizers also had full time jobs!
2012 and 2021
Cindy Esqueda was diagnosed with and passed away from ALS.
In 2012, at age 58, Cindy Esqueda was diagnosed with ALS. She would be the second of Art’s children to be diagnosed.
In 2021, after a 9 year battle with ALS, she passed away from ALS at the age of 67. Her light continues to shine through in our efforts to this day.
2012
Jim Weber was diagnosed with ALS.
Later in 2012, at age 51, Jim Weber was diagnosed with ALS. He would be the third of Art’s children to be diagnosed. He is still living with ALS.
2014 and 2020
LuAnn Vandenberg was diagnosed with and passed away from ALS.
In 2014, at age 60, LuAnn Vandenberg was diagnosed with ALS.
In 2020, after a 6 year battle with ALS, she passed away from ALS at the age of 66. Her light continues to shine through in our efforts to this day.
2014
Weber family’s gene deformity was discovered.
In 2014, the Weber Family’s gene deformity was discovered at Northwestern University by Dr. Teepu Siddique. Although this was great news there was still no known way to slow or stop Genetic ALS, despite this knowledge.
This deformity is not restricted to the Weber line of their family. Research of the family tree to identify and include other families living with this genetic deformity is ongoing.
2017 and 2020
Richard Brychell was diagnosed with and passed away from ALS.
In 2017, at age 67, Richard Brychell was diagnosed with ALS, although it is suspected that he was symptomatic for several years before this.
In 2020, after a 3 year battle with ALS, he passed away from ALS at the age of 70. His light continues to shine through in our efforts to this day.
2019
Cathy Kettner was diagnosed with ALS.
In 2019, at the age of 63, Cathy Kettner was diagnosed with ALS. She would be the fourth of Art’s children to be diagnosed. She is still living with ALS.
She now acts as Co-Chair of the NextGen ALS organization.
2019
Learned about gene silencing.
In June of 2019, Jim Weber and Cathy Kettner attended the ALS advocacy conference in Washington DC where they heard Sabrina P talk about new scientific research to silence know ALS deformities. This was the beginning of an ongoing discussion about pursuing this new and exciting research.
2019
Richard Weber was diagnosed with ALS.
Later in 2019, at the age of 57, Richard Weber was diagnosed with ALS. He would be the fifth of Art’s children to be diagnosed. He is still living with ALS.
He now acts as Co-Chair of the NextGen ALS organization.
2019
Decided to fund CHCHD10 research.
In December of 2019, after working with the ALS Association for 8 years, the decision was made to work specifically on directed research for genetic forms of ALS. This was the beginning of the NextGen ALS initiative to save the next generation of families with Genetic ALS, any of whom could have a 50/50 chance of having that same ALS gene.
2020
Research into options for ALS treatments and nonprofit partners.
After doing some initial research into starting a 501c3, it was decided that it would be more beneficial to partner with an existing nonprofit ALS organization. There were months of research done into the different ALS non-profits and their methodologies. At the same time, there were continued efforts into researching ALS treatment options, including different methodologies for gene silencing and gene editing.
2020
Discovered ASO therapy for gene silencing.
In 2020, as part of their research efforts, our team discovered the use of ASO’s (Antisense Oligonucleotides) as a method to silence genes. This method is already being tested and implemented in a number of similar conditions, and shows great promise in silencing a number of genetic ALS deformities.
2020
Aligned with Project ALS along with Weill Cornell Medicine and Ionis Pharmaceuticals.
Late in 2020, the team officially aligned themselves with the nonprofit organization “Project ALS” as initiative within that organization. The mission of Project ALS is to identify and fund the most promising scientific research that will lead to the first effective treatments and a cure for ALS. Through the team at Project ALS, we are also working with researchers at Weill Cornell Medicine and a Ionis Pharmaceuticals.
2021
NextGen ALS was officially launched.
In May of 2021, we officially launched NextGen ALS. At NextGen ALS we believe in focused, directed, results driven research, with the goal of medical application. For this reason, we are entirely committed to raising funds for targeted research toward developing treatments & cures for genetic forms of ALS.
2022
Jean Micke was diagnosed with ALS.
In 2022, at the age of 63, Jean Micke was diagnosed with ALS. She would be the sixth of Art’s children to be diagnosed. She is still living with ALS.
2024
NextGen ALS becomes a fully independent registered 501(c)(3) nonprofit organization.
When NextGen ALS was first formed in 2020, we established ourselves as an initiative under the umbrella of Project ALS. Now in 2024, we have stepped out from under that umbrella and registered as an independent 501(c)(3) nonprofit organization.