Palo Alto, CA

A FOUNDATION BUILDING STRENGTH INC

EIN 26-1761329

Health & Wellness Disease & Chronic Illness Support Patients & families

Mission

To find treatments for Nemaline Myopathy while providing support and resources to the Nemaline Myopathy (NM) community.

IRS-recognized 501(c)(3) public charity Contributions are tax-deductible

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About A FOUNDATION BUILDING STRENGTH INC

A Foundation Building Strength (AFBS) is a Palo Alto–based 501(c)(3) public charity exclusively dedicated to advancing research into Nemaline Myopathy (NM) and supporting affected individuals and families. The organization combines research funding, patient-centered registries and biobanking, community education, and family convenings to accelerate the development of disease-modifying treatments.

AFBS funds basic and translational projects (including gene therapy, gene-replacement, drug screening, and patient-derived muscle models), operates patient-facing programs (registry enrollment, webinars, regional gatherings, and family conferences), and maintains active research partnerships and a tissue biobank to improve clinical-trial readiness and equity in diagnosis and care.

Notable achievements

Major multi-year research and capacity awards

AFBS secured competitive multi-year awards to build community-led research infrastructure, including a Chan Zuckerberg Initiative Rare As One grant and a PCORI Engagement award to develop a patient-led research network and expand capacity for patient-centered research.

Sustained research investment and project portfolio

The foundation has invested multiple millions of dollars in NM research and has funded dozens of studies worldwide, supporting projects such as ACTA1 gene-therapy development, KLHL40/KLHL41 research, drug-repurposing screens, and creation of patient-derived 3D muscle models.

Built patient-facing research infrastructure

AFBS launched and actively promotes patient enrollment in the Congenital Muscle Disease International Registry (CMDIR), established an NM tissue biobank to support translational work, and runs community programs (webinars, regional gatherings, SciFam conferences) to engage families and clinicians.

At a glance

Total assets: $3.4M
Annual revenue: $1.0M
Tax status: 501(c)(3)Public charity
EIN: 26-1761329
Location: Palo Alto, CA
Website: buildingstrength.org
On Mahalo since: May 2026

Financial figures from the IRS Business Master File, the IRS’s registry of tax-exempt organizations.

Recognition

Selected to participate in the Chan Zuckerberg Initiative 'Rare As One' network (recognition as a patient-led rare disease organization building research networks).

Recipient of a Patient-Centered Outcomes Research Institute (PCORI) engagement award for community capacity-building and patient-centered research efforts.

Visible public fiscal transparency and nonprofit filings with active Form 990 filings and profiles on nonprofit data platforms, reflecting regular reporting and financial disclosure.

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