Drive research efforts that show promise to treat, prevent, or cure Kabuki Syndrome

A major thrust of our efforts is fundraising, which in turn allows us to award grants for research projects that we, along with our Medical & Scientific Advisory Board, feel are most promising. Coinciding with this goal is our intention to foster communication within the medical and scientific communities, encouraging more collaboration and resources to be focused on Kabuki Syndrome. Additionally, we will share this knowledge with the patient community through research conferences, this website, and our Facebook page.  


Support and drive research to produce treatments for Kabuki-related symptoms and develop curative and preventative therapies


Increase awareness to promote donation and foster collaboration among the medical/scientific community leading to new therapeutic pathways


Make connections among the medical/scientific and patient communities, as well as other groups serving families with Kabuki Syndrome


Create strategic partnerships with research institutions, pharmaceutical companies, rare disease clinics and similar foundations, among others 




The board is comprised of three of the founders of the foundation, each with a connection to Kabuki Syndrome through a family member.  All are volunteers and are responsible for the overall strategy and basic operations of the foundation.

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The Advisory Board is comprised of a range of medical and scientific professionals with direct experience treating or researching Kabuki Syndrome.  They help guide our strategies, review research grant proposals, and provide input to our research path priorities.

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The foundation relies heavily on the volunteer efforts of many individuals, including some who possess specific knowledge and/or areas of expertise that help advance our mission.

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Jill Prophet fv - square.jpg

Jill’s professional background is in Consumer Insights and Marketing Strategy, having worked for 18 years in leading consumer products companies, as well as being a partner in a major brand strategy consultancy.  For the past 5 years, Jill has been managing her own growing consulting practice where she works with Fortune 500 companies in identifying new growth strategies. Jill holds an MBA from Northwestern’s Kellogg School of Management. Jill’s connection to Kabuki Syndrome is through her 13-year old niece, Lilly, who thrives while living with Kabuki Syndrome.  Jill has also served as Co-Chair of the planning committee for the 2018 Kabuki Syndrome Research Conference held at Johns Hopkins Hospital in Baltimore.

Founder and Co-President



Annie is the cofounder and Co-CEO of a startup reinventing the rules of work, Werk (www.werk.co). Founded in 2016, Annie has raised $4M in venture capital funding and oversees a team working to incorporate flexibility into enterprises.  Annie is the proud parent of a 3-year-old son with Kabuki Syndrome, and a 5-year old neurotypical son. A former Wall Street attorney, Annie is a natural advocate. In managing treatment for her son Walter, Annie has worked with dozens of the top medical and scientific professionals who are investigating Kabuki Syndrome and other histone methylation defects and treatments.  She is also a patient advocate for pharmaceutical companies considering treatment pathways for those affected by Kabuki.  She is a leader in her community and is spearheading an inclusion initiative at her older son's school focused on children with disabilities.

Founder and Co-President


Pat started his career in Commercial & Investment Banking and later worked in Management Strategy Consulting for Booz Allen Hamilton and Bain & Company. He holds an MBA with Honors from the University of Chicago Booth School of Business. After leaving the corporate world, he has spent much of the last 10 years focused on various community-based efforts.  He has coached numerous youth sports teams and serves as Board President for the local girls softball association. He has served as Chairperson for a PTO fundraising committee, President of the School Board Caucus and Co-Chairman of a campaign that successfully passed a $40MM bond referendum to fund construction for a local middle school. Like Jill, Pat has been inspired by his 13-year old niece with Kabuki Syndrome to advocate for this community. He also served as Co-Chair of the 2018 Kabuki Syndrome Research Conference committee.

Founder and Vice President




Hans T. Bjornsson, MD, PhD

Associate Professor, Genetics and Pediatrics, McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University


Associate Professor Translational Medicine and Pediatrics, University of Iceland - Háskóli Íslands


Clinical Director, Clinical Genetics, Landspitali University Hospital

Andrew Lindsley, MD, PhD

Assistant Professor of Pediatrics, University of Cincinnati School
of Medicine


Division of Allergy and Immunology, Cincinnati Children’s Hospital Medical Center

Gregory M. Rice, MD

Associate Professor of Pediatrics, Division of Genetics & Metabolism

Department of Pediatrics

University of Wisconsin School of Medicine and Public Health

Assistant Professor of Neurology and Pediatrics
Kennedy Krieger Institute, Johns Hopkins Medical Institution

Jacqueline Harris, MD

Park Gerald Chair in Genetics & Genomics, Associate Chief of Genetics & Genomics, Boston Children’s Hospital


Associate Professor, Harvard Medical School

Olaf Bodamer, MD, PhD, FACMG, FAAP

Professor of Pediatrics, Division of Genetic Medicine, University of Washington School of Medicine

Attending Physician, Seattle Children's Hospital

Margaret P. Adam, MD

Clinical Senior Lecturer, University of Manchester


Honorary Consultant Clinical Geneticist, Manchester University NHS Foundation Trust

Dr. Siddharth Banka, MBBS, MRCPCH, PhD



Dana Levinson

Dana is the proud parent of an 11-year-old daughter with Kabuki Syndrome. Since her daughter’s birth, Dana has been involved with the Kabuki Syndrome community by writing articles for the Kabuki Syndrome Network Website and serving as a “first point of contact” for families and professionals wanting to learn more about Kabuki Syndrome. In 2015, Dana led the planning of the first research-based Kabuki Syndrome conference at Johns Hopkins Hospital in Baltimore. In 2018, Dana helped establish the Kabuki Syndrome Foundation, and currently helps monitor the body of research that is currently ongoing.

Amanda Gamboa