Help Find a Cure for C9orf72 ALS and FTD
100% of your Donation
Fuels Research
The CureC9 Program is a program within EverythingALS, a 501(c)(3) nonprofit. EverythingALS takes no overhead on CureC9 Program gifts. Every tax-deductible dollar flows through EverythingALS to the receiving academic institution, where we negotiate indirect costs 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.
100%
Goes to Research Projects
Donate
Three ways to fund the science. All donations are tax-deductible.
- Fund the CureC9 Program: Direct support for the flagship 5-year plan to unlock CRISPR gene therapy for C9 ALS and FTD (Dr. Claire Clelland, UCSF). 100% of donations flow to the science.
- Support this work broadly: An unrestricted fund is split evenly between End the Legacy (which supports the genetic carrier community) and research projects driven towards curing genetic ALS/FTD.
- Push-Ups for ALS: Co-fund critical research with prominent ALS research organizations. 100% of donations flow to research.
Current Flagship
C9orf72 disease begins with a repeat expansion — an excess stretch of DNA that produces toxic RNAs and proteins, and drives both ALS and frontotemporal dementia (FTD). One promising approach is to cut out the excess DNA itself, using CRISPR as the tool. Dr. Clelland’s lab at UCSF has already done that part: they can remove the C9 mutation in cells from patients, and doing so eliminates the pathologic hallmarks of C9 disease. The remaining bottleneck — and the reason no CRISPR therapy for the brain exists yet — is delivery: getting CRISPR into enough cells in the brain and spinal cord to make a clinical difference. Over five years, with a $10 million investment, Dr. Clelland’s lab is ready to take on delivery. Solving it unlocks the first CRISPR gene therapy for C9 ALS/FTD, and the same delivery platform unlocks gene therapies for every other form of ALS and FTD, and for many other neurodegenerative and neurodevelopmental diseases that share this bottleneck.
Unlock gene therapy in the brain
Credit: Original illustrations by Kaylee Morris
Scientist or Professional
Three ways to plug into the work.
Get involved in one of our projects
Browse the research pipeline and find the project that fits your expertise.
I have a drug or compound for ALS/FTD
If you have a compound with an established safety record and a plausible case for ALS or FTD, we want to hear.
General scientific collaboration
Open to a broader conversation? Start here.
Participate as a Patient or Genetic Carrier
Choose the path that fits you — genetic carriers, ALS patients and caregivers, and FTD patients and caregivers each have dedicated partner organizations.
Genetic Carriers & Those At-Risk
Recruiting studies: End the Legacy — the partner organization supporting the genetic carrier community.
Contact for help: info@endthelegacy.org
ALS Patients & Caregivers
Enroll in observational studies: ALL ALS Assess Study.
Contact for help: info@alshopefoundation.org.
FTD Patients & Caregivers
Enroll in observational studies: ALLFTD participate.
Contact for help: info@theaftd.org.
Volunteer
We run on volunteers. Writers, designers, scientists, carriers, families, friends — everyone has a place.
Join the Village
Raise your hand and we’ll find the right fit.
Learn more about the Village
Meet the people already showing up.
Help with a specific project
Global C9orf72 Data Registry
C9orf72 research data is scattered across hospitals, universities, and countries. The most valuable samples in the field come from carriers who were tracked before and after their disease began — blood, spinal fluid, and clinical records from when they were still healthy, and again after symptoms started.C9orf72 Stem Cell Bank
Drug companies and researchers need cells from C9orf72 carriers to test potential treatments. Until now, getting those cells has been difficult, expensive, and inconsistent.Drug Repositioning and Rescue for ALS
There are drugs that have been tested in humans for other conditions and shown to be safe that could work for ALS, but that have stalled on the way there.Novel Biomarker Platform
The goal of this project is to develop a new kind of blood test for ALS. Most diagnostic tests look for one molecule at a time. Like listening to an entire orchestra instead of one instrument, this platform uses nanosensor technology to read patterns across many molecules simultaneously.ALS Progression Biomarkers
Right now, doctors cannot reliably predict how fast ALS will progress in a given patient. This project is building algorithms that predict disease trajectory using clinical and genetic data.Immune Response and Therapeutic Windows
The brain has its own immune system. In C9orf72 disease, immune cells called microglia appear to start out protecting neurons and then, at some point, we think they turn harmful.
Biomarkers of C9 Disease Divergence
Some C9orf72 carriers get ALS, others get FTD. No one knows why. This project uses one of the most powerful imaging facilities in the world
