Fund the CureC9 Program’s first approved project
A program within EverythingALS, directed by a Scientific Advisory Board,
built to materially alter C9orf72 disease
Gifts to the CureC9 Program are tax-deductible. EverythingALS is a brand of Peter
Cohen Foundation, a non-profit 501(c)(3): EIN 84-3055901. The CureC9 Program is a
research program of EverythingALS.
Project
First Flagship: Optimizing CNS delivery for genetic therapies.
The rate-limiting step for any genetic therapy aimed at the central nervous system is not the editing chemistry but the delivery. Solving delivery is the precondition for any C9orf72 (C9) gene therapy reaching patients safely, and a delivery system optimized in C9 will apply to every genetic and sporadic form of ALS and FTD, and to other neurodegenerative and neurodevelopmental diseases that share the same bottleneck.
This is the SAB’s first approved project. Details to follow.
PC: Peter Cohen
CureC9 Program Flagship Fund
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100% of your generous donation will be applied to help people with ALS directly with their expenses and ALS research.
Funding Model
How the CureC9 Program moves donor dollars.
EverythingALS is a 501(c)(3) of the Peter Cohen Foundation, so every donation is fully tax-deductible. EverythingALS takes no overhead from CureC9 Program gifts. At each funded institution we negotiate indirect cost rates below 10 percent, against a research-industry average closer to 60 percent.
For a $1 million gift, this is the difference between roughly $400,000 and more than $900,000 reaching the bench.
Scientific Advisory Board
Our Scientific Advisory Board directs 100% of research funding to the most promising opportunities in familial ALS/FTD. As genetic carriers, scientists, and advocates, they ensure every dollar raised goes where it can make the greatest impact.
Yentli Soto Albrecht, PhD
Yentli Soto Albrecht is an MD-PhD student at the University of Pennsylvania and a carrier of the C9orf72 genetic mutation. Following her father "Brother" Frank's death from C9orf72 ALS in August 2024, she pivoted to neurodegeneration research, developing 11 collaborative C9orf72 projects and the CureC9 program within EverythingALS. She serves as the inaugural End the Legacy Community Science Liaison and is launching the first commercial C9orf72 iPSC biorepository, starting with her father's cells and her own. Dr. Soto Albrecht leverages her triple perspective — genetic carrier, scientist, and physician-in-training — to accelerate therapeutic development for familial ALS/FTD.
A gift to the CureC9 Program is the most powerful statement you can make in support of
the people living with C9-driven ALS and FTD, and the carriers waiting for a treatment
that does not yet exist.
Your donation funds the research most likely to materially alter C9 disease — vetted by
a Scientific Advisory Board drawn from leading ALS/FTD scientists. Every dollar flows
through the Peter Cohen Foundation with no overhead, and at indirect cost rates below
10 percent at each funded institution.
Your generosity makes it possible for the CureC9 Program to fund its first approved
project and the work that follows. With your support, we will deliver the platform on which
the next generation of genetic ALS and FTD therapies is built, and bring treatments
within reach of the community that needs them most. Where possible, we commit to
translating findings beyond C9 ALS/FTD.
Tax Disclosure
Gifts to the CureC9 Program are tax-deductible. EverythingALS is a brand of Peter
Cohen Foundation, a non-profit 501(c)(3): EIN 84-3055901. The CureC9 Program is a
research program of EverythingALS.
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