Introducing Dr. Kristine Cunniff, Our 2026 Strength in Action Honoree The medical community often speaks of “the clinical gaze”: the objective, trained eye of a physician scanning for patterns and pathologies. But for Dr. Kristine (Kris) Cunniff, a board-certified internist in Rhode Island, that gaze was fundamentally shifted the day her granddaughter, Lexi, was born….
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Harneet Sandhu balances a full life. She’s a university student studying criminology, an avid fan of arts and crafts, and the proud parent to an adorable puppy named Mia. She’s also someone who requires around-the-clock care, navigating a world that often struggles to see past her power wheelchair and ventilator. As a featured fundraiser for…
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Featured Fundraiser Lily, age 8, lives in Connecticut, and spends her time hanging out with her school friends, playing with her dolls, doing arts and crafts at home, and participating in Girl Scouts. She loves her family, visiting her grandparents, swimming, and her two cats, Muffin and Jag. Lily also lives with NEB-related Nemaline Myopathy,…
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“Hey Friends!” If you’ve spent any time watching Jackson’s videos online, you’re probably already familiar with his signature greeting. He announces it to the camera with an effortless confidence and a vocabulary that makes it easy to forget he’s only two and a half years old. Jackson is the kind of kid who commands a…
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For 18-year-old Ellary, life is currently a study in dualities. The Rhode Island resident is balancing her final year of high school with her first year of college, navigating a curriculum focused on digital media production. Her goal is clear and professional: to transition into a four-year marketing program and eventually “create marketing campaigns with…
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In West Hartford, Connecticut, 11-year-old Lucas can often be found at his DJ controller, blending beats as a dedicated emcee and Daft Punk fan. When he isn’t practicing his sets, he’s usually with his cat, Aleister (aka “Sweetie”), hanging out with his cousins, or playing Roblox. His mom, Monica, says he’s “fiercely independent,” a trait…
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At A Foundation Building Strength (AFBS), our $3.6 million research investment is currently fueling several high-impact projects aimed at one goal: finding effective treatments for Nemaline Myopathy. Today, we’re thrilled to share the latest progress from our second year of funding for Dr. Coen Ottenheijm and his team (Amsterdam University Medical Center (UMC), Radboud UMC,…
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A Foundation Building Strength is thrilled to share a major milestone in our journey toward effective treatments. For the first time, a comprehensive, multi-year effort is underway to document the progression of Nemaline Myopathy (NM) through Prospective Natural History Studies in North America, Brazil, and Europe. These studies are a prerequisite for progress. By creating…
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At A Foundation Building Strength (AFBS), our mission is fueled by a commitment to world-class science. We’re thrilled to share a significant update from the lab of Dr. Vandana Gupta, part of our current 3-year, $3.6 million research investment Dr. Gupta’s work is focused on some of the rarest forms of Nemaline Myopathy (NM), specifically…
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Last month, Orlando became the epicenter of neuromuscular research as nearly 2,000 clinicians, researchers, and advocates gathered for the 2026 MDA Clinical & Scientific Conference. For A Foundation Building Strength (AFBS), this trip marked a major milestone: our first time attending as a formal patient advocacy organization. Represented by Executive Director Jen Tozer, Founder Marc…
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At nine months old, Ella is defined by two distinct realities. To her parents, Erin and Paul, she is a sharp, observant infant with bright blue eyes and a smile that anchors their world. She mimics adult behaviors and is already beginning to learn early sign language with her mother. To the medical world, however,…
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