NextGen ALS just completed their first major mail campaign. But don’t worry, if your mailbox was empty, you can get up to speed here!
Dear Friends and Family
Our family is excited to share the new direction we started earlier this year. We are now focusing our time, energy, and fundraising efforts toward researching our family’s genetic ALS mutation, which has affected five of the nine Weber siblings. As part of this effort, we started “NextGen ALS”, and it is our mission to prevent ALS from affecting our next generation.
Recent identification of many ALS mutations, coupled with leading edge technologies for gene silencing (ASO’s) and gene editing (Crispr Cas9), have created new opportunities for targeted research for our type of ALS, CHCHD10-R15L. We believe that promising therapies to silence or cure ALS will happen within genetic ALS families like ours.
NextGen ALS was founded as an initiative within Project ALS, a leading non-profit organization in New York. With their guidance, we have started a research project with Weill Cornell University in the Giovanni Manfredi Lab, and are working to fund research to create a targeted ASO for our genetic ALS mutation. The researchers are also exploring new therapy options to slow the progression of the disease.
This two-year research project will cost $250,000. Our family, in the spirit of leading by example, donated the first $100,000. With current fund-raising efforts, we are quickly approaching $150,000 raised. We are inviting you to partner with us in reaching our goal. Gifts of all sizes are needed and gratefully accepted. With your generosity, we can provide hope to current and future ALS patients!
A Family Afflicted… fighting back!
NextGen ALS was started by the Weber family, who carries a genetic strain of ALS, which has a 50/50 chance to be passed on to our “Next Generation”. We are entirely committed to raising funds for research toward developing treatments and cures for genetic forms of ALS.
Who We Are
NextGen ALS is set-up as an initiative within Project ALS, a non-profit that identifies and funds the most promising scientific research that will lead to the first effective treatments and a cure for ALS.
Together with Project ALS, we have developed relationships with Dr. Giovanni Manfredi and Dr. Hibiki Kawamata Fujita, and the team at Weill Cornell Medicine. In addition, we have also developed a strong relationship with Dr. Neil Schneider and the team at the Eleanor and Lou Gehrig ALS Center at Columbia University.
We believe in the power of collaboration, and we place a tremendous value in working together toward a common goal. Together we can end Genetic ALS!
The Science
In the last decade, new technologies have allowed scientists to both identify the specific gene that causes our family’s ALS (CHCHD10) and to develop new types of drugs, like antisense oligonucleotides (ASOs), that have shown promise in effectively treating other brain diseases. With Project ALS, Weill Cornell Medicine, and The Eleanor and Lou Gehrig ALS Center at Columbia University, our team is dedicated to finding a revolutionary treatment to halt the progression of Genetic forms of ALS.
We believe that the CHCHD10 gene can be silenced completely without harmful effects, making this a potentially curative approach to genetic ALS treatment.
It is our hope that these methods can be applied toward treatment of this, and other forms of ALS.
You Can Help
Please help us end Genetic ALS by making a donation that will go toward funding targeted, directed research for treatments, and hopefully a cure for Genetic ALS. All donations go through Project ALS, a registered 501(c)(3), and are fully tax deductible.
You can donate online by clicking the “donate now” buttons at the top and bottom of this page, or you can donate by check by mailing it to the address below. Please fill out checks as directed. This will ensure all checks go toward the research that NextGen ALS is funding.
Project ALS
C/O Gail Carson
4330 Camp Kaufmann Road
Huntingtown, MD 20639
Make checks payable to: Project ALS
In memo area note: NextGen ALS
Stay in the Loop
If you have any questions, you can contact our co-chairs, Richard Weber and Cathy Kettner… their contact information is below. We also encourage you to look over our website for more information about our story, and our struggle against ALS. Lastly, please follow us on social media, and share information with friends and family to help raise awareness about ALS. Join the fight, and together we can end Genetic ALS!
Richard Weber - (616)403-7489
Cathy Kettner - (920)213-6866
ALS.NextGen@gmail.com