ACTION FOR ARSACS Foundation USA
U.S. Non-Profit Medical Research Organization

Action for ARSACS Foundation USA

Accelerating research, supporting families, and uniting communities in the fight against ARSACS.

Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay is a rare neurodegenerative condition. We are dedicated to funding groundbreaking scientific breakthroughs and providing compassionate guidance for patients and caregivers across the United States.

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Dedicated to ARSACS
USA
Non-Profit Foundation
Global
Research Networks
Hope
Through Science
Medical Research Laboratory

Understanding The Condition

What is ARSACS?

Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay affects motor coordination, balance, and nerve function. Early diagnosis and targeted research are vital for future treatments.

About The Foundation

Empowering Families & Advancing Science

The Action for ARSACS Foundation USA was established to bridge the gap between families diagnosed with ARSACS and the premier medical researchers racing to find effective therapies and a cure.

We believe that rare diseases deserve robust attention and resources. By connecting patients, advocating for clinical excellence, and funding vital laboratory studies, we strive to transform hope into tangible clinical results.

Education

Providing clear insights into diagnosis and care.

Support

Standing shoulder-to-shoulder with affected families.

Our Core Pillars

Driven by Purpose & Scientific Rigor

Our strategic focus areas are designed to maximize impact across research, patient advocacy, and community support.

Targeted Research

Funding world-class laboratories and clinical investigators working on gene therapy, neuroprotection, and disease-modifying treatments for ARSACS.

Community & Advocacy

Uniting families, medical professionals, and advocates across the country to raise awareness and champion policies that support rare disease research.

Patient Guidance

Offering compassionate resources, guidance on clinical trial readiness, and a trusted network of support for newly diagnosed individuals and caregivers.

Take Action

Join Us in the Race Against ARSACS

Every contribution, whether through financial support, spreading awareness, or participating in our initiatives, brings us one step closer to clinical treatments and a cure.

1

Make a Donation

Directly fund research laboratories and patient support programs.

2

Share Our Mission

Help raise rare disease awareness within your local community.

3

Connect with Leadership

Reach out directly to Labate Sorman to discuss partnerships.

Stay Updated

Subscribe to our newsletter to receive updates on ARSACS research milestones and foundation events.

Official Contacts

Get in Touch with Us

Have questions regarding research, donations, or family support? Reach out to our team today.

Foundation Headquarters

Organization Action for ARSACS Foundation USA
Contact Person Labate Sorman
Email Address labate.sorman@actionforarsacs.com
Phone Number +1 (212) 995-0469
Physical Address 20621 Cherrywood Ct
Sterling, Virginia 20165-3525
United States

Send Us a Direct Message

Fill out the form below to send an inquiry directly to Labate Sorman and our team.