Board of Directors
Emile Najm
Co-Founder & CEO
After years of genetic testing, Emile Najm’s eldest child, finally received a diagnosis of KAT6A Syndrome in 2016 at the age of eight. With his wife Natacha, Emile founded the KAT6A Foundation in 2017 to improve the lives of those affected with KAT6A and KAT6B Syndromes. In 2018, Emile led the development of a patient registry with the National Organization for Rare Disorders (NORD). Emile is eager to help build awareness and accelerate the discovery of treatments for KAT6A and KAT6B syndromes. Emile believes parents hold the power to accelerate research and drive progress. Emile has been instrumental in forming relationships with families, clinicians and scientists to advance progress in studying KAT6A and KAT6B syndromes and novel treatments. These alliances have been influential in catapulting KAT6A and KAT6B syndromes onto the map of exciting targets to study.
Dr. Jordan Muller
Board Chair
In April 2013, Jordan Muller received the whole exome sequencing test result from diagnostic testing company GeneDx indicating that his daughter’s KAT6A gene was anomalous. This was a unique finding – at the time, the testing company was unable to identify another person anywhere in the world with a KAT6A anomaly and any sort of neurologic or developmental condition. Jordan immediately created a webpage in hopes of finding others. Within a year he connected with five other families and they formed the KAT6A support group on Facebook. Jordan organized several fundraisers in the support group, which led to funding early research on KAT6A at Dr. Arboleda’s lab at UCLA. Today, Jordan serves as Board Chair of the KAT6 Foundation and is enthusiastic to accelerate patient-centered research within the KAT6A and KAT6B community. He has been integral in helping the foundation receive funding through grants, such as the Chan Zuckerberg Initiative: Rare as One grant that the foundation was awarded in 2020 and 2022.
Karen Ginsburg
Chair of Fundraising
Karen Ginsburg is the mother of a daughter who was diagnosed with a KAT6A variant in 2016. Since that time, she and her family have been very active in promoting research to help understand and address the unique challenges of this condition. She is Chair of the Fundraising Committee for the KAT6 Foundation. She is avidly interested in functional medicine and the use of nutrition and nutriceuticals to improve health. In addition to being a mom and working for the KAT6 Foundation, she is a Licensed Clinical Social worker in private practice and is Dean of Faculty for the Gestalt Training Institute of Philadelphia.
Maureen Martini
Board Member
Maureen Martini is an accomplished professional with over twenty years’ experience in the pharmaceutical industry. She has a proven track record in translating strategic objectives into project delivery and operational efficiencies. Maureen works as a business consultant addressing the challenges R&D biotech companies face with rapid growth. Having worked for several rare disease companies, and being a mom to a child with a rare disease, Maureen acutely understands the complexities and challenges of diagnosis, complex care and treatment in unchartered territory. Maureen lives in Pennsylvania with her husband and three daughters.
Myria Normann
Board Member
Myria Normann lives in Colorado with her husband, Matt, and their 2 adult children Megan and Jordan. Matt and Myria have 3 children, one of which was born with the KAT6B gene variant. Mitchell (diagnosed with GPS) was born in 2001 in Wisconsin and he passed away in 2017. Myria offers the unique perspective of having a significantly impacted child with GPS and learning to live gracefully with the grief of losing a child. Myria is a Director of Nursing for PASCO, a Home Care Agency that primarily serves adults and children with complex medical needs and developmental disabilities. In Colorado, state laws allow for parents to work as nurses, CNA’s, and personal care attendants for their loved ones. Myria is an advocate of least restrictive housing options and equal opportunities for relative caregivers of children and adults with disabilities.
Dr. Andrew Rankin
Research Advisor
Andrew Rankin has over 25 years of experience in pharmaceutical medicine developing effective, transformational therapies for multiple high medical needs conditions, including the clinical development of medicines for ultra-rare, genetic orphan diseases. Andrew is personally involved with a child affected by the KAT6A gene variant, and he brings both this experience and his professional knowledge and expertise to support strategic thinking and research to increase our understanding and potential therapeutic approaches for treating people living with KAT6A and KAT6B. Since joining the Board of Directors, Andrew has used his professional connections, experience and scientific knowledge to drive, create and support new research projects globally to increase our understanding of the cellular mechanisms and consequences of KAT6A and KAT6B mutations.
David Woodbury
Board Secretary
David Woodbury is retired from careers in the paper industry, health care, and as a Registered Maine Guide. David has been the Board Secretary since 2017 and has been involved in many aspects of the Foundation. David helped develop the patient registry questions, has written articles for the website, contributed a video interview to NORD, and hosted a virtual webinar. His son was 27 years old when diagnosed with KAT6A in 2017, which gives David a unique perspective and the ability to offer our community great support and insight into the disorder’s progression.
Kevin Young
Chair of Finance and Auditing
Kevin Young joined the KAT6 Foundation community in 2016 when his son, Jack was diagnosed with KAT6A. Kevin draws from his years of experience in the investment industry and serves on the Board as Director of Finance. In this role, he ensures proper oversight of the budget and major financial decisions of the Foundation. He is looking forward to growing the financial strength of the Foundation and eventually building an endowment fund. Kevin and his family have been instrumental in fundraising for the Foundation at our annual KATwalk event and in raising awareness for Rare Disease Day.
Team Members
Dr. Natacha Esber
Co-Founder & Director of Science and Research
Natacha Esber, along with her husband Emile Najm, founded the Foundation in 2017. Natacha is an internal medicine physician, a member and speaker for the National Organization for Rare Disorders (NORD), and a mother of a child affected by KAT6A syndrome. She has been actively involved with raising awareness and funds to support the KAT6 Foundation’s mission. In addition to this, Natacha has contributed to many publications relating to KAT6A syndrome and is a director of science and research at the KAT6 Foundation. Natacha has used her passion for the arts to organize many events that promote inclusion of individuals with disabilities in music and theater.
Susan Hartung
Advocacy Director
Susan Hartung is a retired special education teacher and currently works for Medical Management and Rehabilitation Services as their Provider Relations Specialist. In this position she networks with the over 100 providers of services for the developmentally disabled in the state of Md. Susan holds a B.S. in Therapeutic Recreation and a M.A.Ed.. in Special Education. Susan has a 37 year old son with KAT6A and a 33 year old daughter with Autism. Susan has been a strong advocate for disability services for over 30 years. She is a founding Board member of K.E.E.N. – National Recreation Program for children with Developmental Disabilities and has chaired several developmental disability organizations at the county and state level. Susan firmly believes that through effective advocacy parents can improve the quality of life for not only their child but all individuals with disabilities.
Dr. Bhawika Lamichhane
Registry Support
Dr. Bhawika Sharma is a patient registry coordinator and scientific advisor for the KAT6 Foundation. She has been actively involved with the Foundation since 2021. Her role includes patient communication, registry curation, communication with the scientific community, and advising researchers. She received her PhD from the University of Utah, where her research focused on developmental hematopoiesis. She is currently a postdoctoral researcher at Stanford University studying aging and neurodegenerative diseases.
Dr. Typhaine Lejeune
Research Advisor
Typhaine Lejeune is a veterinarian and board certified toxicologic pathologist. She has worked in the pharmaceutical industry in Canada for the past 15 years in preclinical drug development. Her experience in helping companies go into clinical trial makes her a huge asset to our board. Additionally, Typhaine is a parent of a child with a KAT6B gene variant and offers great support to families living with KAT6B related disorders. She has presented her scientific expertise to the KAT6 community and is an integral part of the fundraising events hosted by the KAT6 Foundation internationally.
Aimee Reitzen
Website Coordinator
Aimee Reitzen was a founding member of the KAT6 Foundation’s Board of Directors and served from 2017-2022. She served in a variety of roles including Director of Communications during her Board tenure and launched the kat6a.org website in 2017. She has orchestrated many fundraising and awareness events for the Foundation including the annual KATwalk. After her son was diagnosed with KAT6A in 2016, she became passionate about supporting families in the KAT6 community and implemented the Empowered Grant program that exists today to reimburse families for therapeutic equipment and therapy services. Aimee is a strong advocate for implementing Augmentative and Alternative Communication (AAC) in schools and in her community. Today, Aimee is the Foundation’s Website Coordinator.
Megan Stetts
Social Media Coordinator
Megan Stetts joined the KAT6 Foundation in July 2022 in the role of Social Media Coordinator and has since expanded her role to include administrative support to the fundraising team. Megan lives in Spring Lake, MI with her husband Aaron and nine-year-old daughter Olivia. Megan is new to the KAT6 community, but has been friends for over 20 years with Katie Bator, a mother to a child diagnosed with KAT6A syndrome, and is an avid supporter of Team Benjamin.
Dr. Tanya Tripathi
Research Coordinator
Tanya Tripathi is a research officer at the Murdoch Children’s Research Institute in Victoria, Australia where she is working in collaboration with the KAT6 Foundation to facilitate KAT6 research internationally. She specializes in early motor development of infants and children who are at risk or identified as having a developmental disability. She is responsible for organizing the KAT6A and KAT6B Virtual Symposium Series, which is the semi-annual gathering of KAT6 researchers. Tanya has been a key player in growing our research network and analyzing the extensive archive of KAT6A and KAT6B gene articles.
Jessica Wiemann
Empowered Grant Coordinator
Jessica Wiemann is a happy mother raising three wonderful kids on the central coast of California with her husband, Jesse. Their middle child, Jack, was diagnosed with KAT6A in 2020. Jessica was previously an administrator for assisted living facilities, and is now passionately working on changing their local special education department to be more accessible and inclusive for all, even getting an inclusive playground built at Jack’s school! Jessica has been serving the Foundation as a volunteer for the past two years by helping many families get approved for therapies and assistive equipment through the Empowered Grant program.
Marjorie Weintraub
Fundraising Support
Marjorie Weintraub joined the KAT6 Foundation in 2021. She has designed and continues to implement fundraising strategies for research initiatives and Empowered Grants. A Senior Development Professional with extensive experience in all aspects of strategic campaign planning, fundraising, and organizational development, Ms. Weintraub brings to KAT6 a proven track record in identifying, cultivating, closing, and stewarding donors and prospects for major gifts and has raised over $800 million during her career.
