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About Us

We are an entrepreneur and neurologist who launched Rafa’s Moonshot to advance STXBP1 research and fight rare genetic diseases for our son, Raphael, and millions of children worldwide.

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Our quest for a cure

Shooting for the Stars

Our mission is driven by the meaning of “Rafa”—to cure in Hebrew—and the bold ambition of a “moonshot,” aiming for seemingly impossible goals. Inspired to change the future of STXBP1 research and treatment, we’re dedicated to finding innovative treatments and, ultimately, a cure.

the stxbp1 unicorn

Hi, I’m Raphael

I was diagnosed with STXBP1 at 18 months. My journey started off just like any other kid’s—healthy and on schedule. But soon, my mom, a brain doctor, noticed my unusual movements. Despite hitting a bump in the road with my development, we finally uncovered the reason through genetic testing.

But here’s the thing—I’m all about joy, determination, and big dreams. My laugh is guaranteed to make you smile, and my eyes? They’ll have you planning our next adventure. With a love for family, kindergarten, and any chance to splash in the water, I’m on a mission to achieve the impossible, one giggle at a time!

our team

Rafa’s Crew Members

Sagi Gidali

Co-Founder, Dad & Entrepreneur

I am a visionary entrepreneur and a devoted father. Having successfully built and exited two cybersecurity startups, I am now dedicating myself to pioneering innovation and creative thinking in the realm of rare diseases to find a cure for Raphael’s condition and other single-gene disorders. Failure is not an option.

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Ella Gordon, MD

Co-Founder, Mom & Neurologist

I am a neurologist and Raphael’s biggest advocate. With an extensive background in neurology and patient care, I bring a wealth of knowledge and understanding to the table. My goal is to bridge the gap between clinical practice and innovative treatments. Raphael’s courage and resilience inspire me at every step.

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scientific Advisory Board

Expertise Guiding Innovation

Our advisory board is a mosaic of experts from various fields, including medicine, research, neuroscience, pharma, and tech. They offer invaluable guidance and insights, ensuring our mission is steered towards impactful and innovative solutions.

Bruria Ben-Zeev, MD

Head of the Pediatric Neurology Unit, Sheba Hospital. Expert in rare Pediatric neurogenetic disorders.

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Illana Gozes, PhD

Professor of Clinical Biochemistry, President European Society for Neurochemistry (ESN)

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Daniel Kaganovich, PhD

Professor of Neurobiology
University of Southampton. Founder, 1Base Pharmaceuticals.

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Shane Wald-Altman, PhD

Founder and CEO, QR Genetics. Specializing in genetic diseases.

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Efrat Ben-Zeev, PhD

Research Associate, Weizmann Institute of Science
Expert in Computational Chemistry

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Nofar Mor, PhD

Head of RNA therapy program, SCRC, Sheba Medical Center

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Lior Dor, PhD

Research Associate, ALYN Hospital. Co-founder, Rare Smile, the Israeli organization for STXBP1 disorders.

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Fuel our Moonshot Journey.

Let’s pave the way to a brighter future for Raphael and countless children worldwide. Support our mission to make a difference and find a treatment.

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