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 of Directors is comprised of six members, three of whom are the founders of the organization.  Each has a connection to Kabuki Syndrome through a family member.  All are volunteers and oversee the overall strategy and operations of the foundation.  Daily operations are managed by a part-time executive director.


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.


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




Executive Director

Janet’s professional career began as a consultant at Deloitte Consulting, where she worked with Fortune 500 companies in the US and Europe streamlining business processes into integrated management systems.  After consulting, Janet transitioned into retail where she managed $18M in annual sales and established profitable vendor relationships.  She has a BS from Boston College.  One of her proudest achievements has been parenting her children, Emily and Ryan.   For the past 11 years, Janet has been navigating her daughter’s Kabuki Syndrome diagnosis and has been a fierce advocate for her medically, socially, and academically.  Janet is thrilled to be working with KSF on mobilizing fundraising efforts to find a viable treatment for Kabuki Syndrome. Janet lives in New York City with her husband Michael, and her children Emily and Ryan. In her spare time, she is troop leader to 14 girls with a variety of special needs, introducing them to leadership and life skills in different contexts.   


Jill Prophet fv - square.jpg


Founder and President

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 Vice 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.


Vice President

Leila is a founding partner of Kindred Capital, a venture capital firm based in London England with over $200M under management.  Prior to founding Kindred, Leila was on the founding team of Silicon Valley based genomics company GenapSys, and spent a number of years at Bain & Company as a management consultant.  She has a degree in math and philosophy from Yale University and a Harvard Business School MBA.  Leila is the proud parent of 4-year old daughter Roya, who was diagnosed with Kabuki Syndrome when she was 6 months old, and was the inspiration for the Roya Kabuki Initiative at Boston Children’s Hospital which Leila set up with her husband Edoardo.  Together Leila and Edoardo, together with their friends and family, have fully sponsored the first four years of the Roya Kabuki Initiative, which constitutes an interdisciplinary Kabuki clinic as well a research program to search for therapies and eventually a cure for Kabuki Syndrome.  Leila lives in London, England, with her husband Edoardo, and with their daughters Roya and Aria, and their son Luciano.


Vice President

Edoardo Zegna is the Chief Marketing Officer at Ermenegildo Zegna Group, and is an active investor in technology companies and start-ups.  His career has been focused on retail and digital disruption, having been on the founding team of American clothing retailer Everlane, and starting his career at The Gap both in New York and in their corporate headquarters in San Francisco.  Together with his wife Leila, Edoardo lives in London with their three children, including their 4 year old daughter Roya who has Kabuki Syndrome.  Roya served as the inspiration for Edoardo and Leila to establish the Roya Kabuki Initiative at Boston Children's Hospital, which they continue to be very involved in.  Edoardo earned his BA from Georgetown University.


Vice President

Tom is a fourth generation owner and VP of his family's 11 store supermarket chain. Tom has held many different positions with the company and is currently VP of the E-Commerce division, Digital marketing, Produce, and Change Management.  Prior to joining his family’s company Tom worked for Nestle Waters North America on their finance team. Tom and his family are heavily involved in raising funds and driving research for the last 20 years for the Yale Eye Research Center at Yale Medical Center. Tom has a bachelor's degree in business management and psychology from Bryant University in Smithfield, Rhode Island. Tom and his wife Jenna live in Connecticut and are the proud parents of 3 children, Harper (7), James(4), and Sam (1) who was diagnosed with Kabuki Syndrome at just 3 weeks of age. Since the birth of Sam, Tom has been in search of a way to get involved in aggressively mobilizing the efforts in driving research for Kabuki Syndrome and is excited to be a part of the KSF board.



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

Kasturi Haldar, PhD

Rev. Julius A. Nieuwland C.S.C. Professor of Biological Sciences
James Parsons and Carrie Quinn Director,
Boler-Parseghian Center for Rare and Neglected Diseases
Editor-in-Chief, PLoS Pathogens
University of Notre Dame

Jacqueline Harris, MD

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

Olaf Bodamer, MD, PhD, FACMG, FAAP

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


Associate Professor, Harvard Medical School

Margaret P. Adam, MD

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

Attending Physician, Seattle Children's Hospital

Dr. Siddharth Banka, MBBS, MRCPCH, PhD

Clinical Senior Lecturer, University of Manchester


Honorary Consultant Clinical Geneticist, Manchester University NHS Foundation Trust


Gregory M. Rice, MD

Associate Professor of Pediatrics, Division of Genetics & Metabolism

Department of Pediatrics, University of Wisconsin School of Medicine and Public Health



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.