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Portsmouth Oktoberfest event Sunday will raise funds to battle rare disorder | EastBayRI.com - News, Opinion, Things to Do in the East Bay

PORTSMOUTH Fifteen-year-old Ellary Kinnane of Portsmouth, who lives with Nemaline Myopathy (NM), cannot eat, breathe or walk on her own. She is wheelchair-bound, and uses a ventilator day and … ....

Mike Macfarlane , Kara Niewohner , Cindy Kinnane , A Foundation Building Strength , Fifteen Year Old Ellary Kinnane , Nemaline Myopathy , Sunset Cove , Island Park , Foundation Building Strength ,

SC mother competes in NYC Marathon in honor of late daughter

An Indian Land mother is racing for a mission in hopes of raising money to help further research in a rare muscle condition that cut her young daughter's life short. ....

South Carolina , United States , Erica Redinbo , Foundation Building Strength , A Foundation Building , Nemalin Myopathy , Nemaline Myopathy , Foundation Building Strengthen ,

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

/PRNewswire/ A Foundation Building Strength (AFBS), a 501©3 non-profit has been approved for two major awards that will significantly benefit the Nemaline. ....

Gustavo Dziewczapolski , Marc Guillet , Sourcea Foundation Building Strength , A Foundation Building Strength , Chan Zuckerberg Initiative , Outcomes Research Institute , Foundation Building Strength , Nemaline Myopathy , Patient Centered Outcomes Research Institute , Eugene Washington , Executive Director , Director Gustavo , Family Conference , Palo Alto , Foundation Building ,