PRESS RELEASES AND NEWSLETTERS

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Press Releases & Other News

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14 June 2022: Kabuki Syndrome Foundation Awards $125,000 for Development of Neurological Assessment Tool for Clinical Trials

  • KSF granted the funds to Dr. Jacqueline Harris of Kennedy Krieger Institute, who is an established expert in neurodevelopmental disabilities including Kabuki syndrome.

3 May 2022: ORYZON Starts Preclinical Collaboration on Kabuki Syndrome with Kennedy Krieger Institute and Johns Hopkins University

  • KSF is working closely with Dr. Jacqueline Harris to prepare the Kabuki syndrome community for this clinical trial. We will share more details as they become available. 

28 February 2022: Kennedy Krieger Patient with Kabuki Syndrome Stars in Episode of ABC's 'The Good Doctor,' Spotlighting This Rare Disease

  • A Kennedy Krieger Institute physician and a longtime patient play important roles in an upcoming episode of the popular ABC-TV medical drama, “The Good Doctor.”

22-23 October 2021: Virtual Kabuki Syndrome Foundation Research Conference

  • Thanks to your generosity, we raised over $300,000 after matching contributions from 2 families!

  • Over 345 individuals from 20 countries logged into the event platform over the 2 day conference; our largest attendee record to date!

  • 16 researchers from top institutions shared the latest information on Kabuki syndrome research; 7 devoted and dedicated patient advocacy leaders highlighted their outreach programs; and 3 innovators from biotech showed us tremendous opportunities that exist in this space

  • 8 inspiring adults who have Kabuki syndrome shared their journeys and showed us that persistence and a positive mindset can lead to great achievements

27 September 2021: AllStripes + KSF Partnership is formed

  • As the leading research platform dedicated to rare diseases, AllStripes makes it easy for patients to contribute to new treatment studies from home.

21 September 2021: Oryzon announces $1 million grant from Kabuki syndrome philanthropists to support a precision medicine Phase I/II trial with Vafidemstat

  • HOPE will be the first clinical trial in precision medicine with vafidemstat in neurodevelopmental diseases

  • Multicentric study to assess the efficacy of vafidemstat in Kabuki Syndrome patients

  • Expected to start in early 2022

  • In collaboration with the Kennedy-Krieger Institute