A Foundation Building Strength
Programs and results
What we aim to solve
Our programs
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.
NEMALINE MYOPATHY CONFERENCE
ENGAGEMENT CONFERENCE FOR FAMILIES WITH NEMALINE MYOPATHY, CLINICIANS AND RESEARCH INVESTIGATORS
Where we work
External reviews
Photos
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
A Foundation Building Strength has three main strategies for getting to treatment:\r\n\r\n1. Review and analyze previous research accomplishments and develop key strategies for speed to treatment.\r\n2. Raise enough funds to be able to fund research proposals on a bi-annual basis.\r\n3. Provide education and engagement opportunities such as webinars and conferences for families of those affected by Nemaline Myopathy, clinicians and research investigators.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
We have not yet found a treatment/cure for Nemaline Myopathy. \r\nWe have published the Care Protocol for Congenital Myopathies.\r\nWe host family conferences every year.\r\nWe host a Nemaline Myopathy Conference every other year.\r\nWe have established partnerships with other organizations to help further our quest for NM treatment.\r\nWe participate in the Congenital Myopathy Registry.\r\nWe have funded a Congenital Myopathy Tissue Registry.
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
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A Foundation Building Strength
Board of directorsas of 02/02/2023
Marc Guillet
Agile Physical Therapy
Term: 2008 - 2016
Boris Shimanovsky
Factual
Board leadership practices
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? No -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? No -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No