Palo Alto Non-Profit Receives Two Significant, Multi-Year Awards for Capacity-Building and Network-Building

PCORI and CZI awards lay foundation for game-changing growth and research momentum

PALO ALTO, Calif., May 12, 2022 /PRNewswire/ -- A Foundation Building Strength (AFBS), a 501©3 non-profit has been approved for two major awards that will significantly benefit the Nemaline Myopathy (NM) community:

• The Chan-Zuckerberg Initiative (CZI) has awarded AFBS a three-year, $600,000 grant to develop a patient-led collaborative research network, with a key focus on improving diagnosis and diversity, equity, and inclusion within the disease area
• The Patient-Centered Outcomes Research Institute (PCORI) awarded AFBS a two-year, $248,646 award through the Eugene Washington PCORI Engagement Awards program. Funds will support efforts to build community capacity and build toward patient-centered outcomes research in NM

Marc Guillet, Executive Director and co-founder of AFBS, will lead both projects, along with AFBS Scientific Director Gustavo Dziewczapolski.

Activities included in these projects include:

1. Building a patient-led network
2. Recruiting 75 families to partner in 10 webinars over the course of two years
3. Working with diverse NM stakeholders to launch efforts that address the affected community's most urgent concerns
4. In-person gatherings, including a Scientific and Family Conference in Nashville, TN (6/30 - 7/3/22)

"I'm excited that we have the opportunity to build meaningful momentum in NM research, incorporating the most valuable factor in the work we do: our community members," says Guillet. "I'm eager to work more closely with families around the world over the next two years."

PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions.

The Chan Zuckerberg Initiative was founded in 2015 to help solve some of society's toughest challenges. AFBS is one of only 20 organizations selected for this year's competitive CZI "Rare As One" network.

A Foundation Building Strength was founded in 2008 by two Palo Alto parents of a child affected by Nemaline Myopathy (NM), a rare congenital condition causing incurable muscle weakness.  Many people with NM can't breathe, swallow, speak, or walk on their own. AFBS is the largest organization that operates solely to advance research of NM and support families affected by it. AFBS works to create a fully functioning NM ecosystem, where researchers, clinicians, and the affected community supports each other to ease the NM burden and advance research.

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SOURCE A Foundation Building Strength