A Foundation Building Strength

aka AFBS   |   Palo Alto, CA   |  www.buildingstrength.org

Mission

A FOUNDATION BUILDING STRENGTH FOR NEMALINE MYOPATHY HAS A MISSION TO FIND TREATMENTS FOR NEMALINE MYOPATHY AND SUPPORT FAMILIES CARING FOR THOSE WITH THIS DEBILITATING MUSCLE MYOPATHY.

Ruling year info

2008

Executive Director

Mr. Marc Guillet

Treasurer

Mr. Willie Quinn

Main address

3825 El Camino Real

Palo Alto, CA 94306 USA

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EIN

26-1761329

NTEE code info

Specifically Named Diseases Research (H80)

Alliance/Advocacy Organizations (G01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

NEMALINE MYOPATHY RESEARCH GRANTS

GRANTS AWARDED TO RESEARCH INVESTIGATORS TO FIND A CURE/TREATMENT FOR NEMALINE MYOPATHY.

Population(s) Served

ENGAGEMENT CONFERENCE FOR FAMILIES WITH NEMALINE MYOPATHY, CLINICIANS AND RESEARCH INVESTIGATORS

Population(s) Served

Where we work

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Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

A Foundation Building Strength has a laser focused mission to find treatments for Nemaline Myopathy and to support families who have been affected by the debilitating disease.

A Foundation Building Strength has three main strategies for getting to treatment:

1. Review and analyze previous research accomplishments and develop key strategies for speed to treatment.
2. Raise enough funds to be able to fund research proposals on a bi-annual basis.
3. Provide education and engagement opportunities such as webinars and conferences for families of those affected by Nemaline Myopathy, clinicians and research investigators.

A Foundation has a committed Board of Directors and a strong support community. Although the Nemaline Myopathy community is very small, they are very dedicated to helping find treatments for NM.

We have not yet found a treatment/cure for Nemaline Myopathy.
We have published the Care Protocol for Congenital Myopathies.
We host family conferences every year.
We host a Nemaline Myopathy Conference every other year.
We have established partnerships with other organizations to help further our quest for NM treatment.
We participate in the Congenital Myopathy Registry.
We have funded a Congenital Myopathy Tissue Registry.

Financials

A Foundation Building Strength
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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A Foundation Building Strength

Board of directors
as of 8/10/2016
SOURCE: Self-reported by organization
Board co-chair

Marc Guillet

Agile Physical Therapy

Term: June 2008 - Aug 2016


Board co-chair

Sharon Fiedler Shimanovsky

Boris Shimanovsky Vice President

Factual

Clifford Katz Attorney

Kelley Dreye

Patricia Mitchell Finance

Baxter Pharmaceutical

Jay Kershner VP Customer Service

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