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 







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 Dean is the Co-Founder and Co-CEO of Werk, the first and only people analytics platform that helps companies improve their flexibility performance through data. Founded in 2016, Werk's unique data-based approach to flexibility helps companies drive productivity, retention, and engagement within their employee base. Werk has raised $5M in venture capital funding from top investors.  Annie is the proud parent of a 4-year-old son with Kabuki Syndrome, and a 6-year old neurotypical son.  A thought leader on the future of work, Annie has been featured in The New York Times, The Wall Street Journal, Fast Company, CNBC’s “Squawk Box,” Cheddar TV, and more. Prior to founding Werk, Annie worked on Wall Street as a corporate attorney representing institutional lenders in billions of dollars of transactions secured by real estate. Annie earned her BA from Syracuse University and her law degree from Fordham University. 

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. Then, in 2018, Dana helped establish the Kabuki Syndrome Foundation, and currently helps monitor the body of research that is ongoing across various institutions.

Amanda Gamboa

Amanda is the mother of two toddlers, a critical care nurse, and a freelance writer. Her daughter has Kabuki Syndrome and their rare disease journey began in 2014 with a lot of advocacy and answer-seeking in an area where Kabuki Syndrome had not been previously diagnosed. Amanda now leads the team that plans the annual Pacific Northwest Kabuki Syndrome Conference, which gathers families in the region for a weekend of socialization, helpful presentations, and research updates.


Amanda holds bachelor’s degrees in nursing and health sciences, as well as a graduate certificate in public health. Her interests in health care and communication support her motivation to educate others and advocate for this special community.

© 2019 by Kabuki Syndrome Foundation


P. O. Box 214, Northbrook, IL  60065

The Kabuki Syndrome Foundation is a 501(c)(3) non-profit corporation