Board of Directors
Dr. Jordan Muller
Board Chair, Interim Executive Director
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 senior 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 and successful global regulatory marketing approval of medicines for ultra-rare, genetic orphan diseases. Andrew has been personally involved with a child affected by the KAT6A gene variant and 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. Andrew is now living in the UK where he is deeply involved in the rare disease community, national health service rare disease strategy and is a trustee of another ultra rare disease charity. Since joining the KAT6 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, rural hospital administration, and as a Registered Maine Guide. David has been the Board Secretary since 2017 and has been involved in many aspects of the Foundation. As an author in fiction and non-fiction, he has also written articles for the website, contributed a video interview to NORD, and hosted a virtual webinar. David and Beth live in northern Maine with their son, Sam, who was 26 years old when diagnosed with KAT6A in 2017. Their experience gives them a long-term perspective when offering support and insight, especially to those newly becoming acquainted with the challenges of KAT6.
Rachel Worden
Board Member, Co-chair of Grants and Sponsors
Rachel Worden is a parent advocate, author, and entrepreneur whose journey began when her daughter, Moira, was diagnosed with KAT6B, cerebral palsy, and cortical visual impairment. Driven to support her daughter and others facing similar challenges, Rachel immersed herself in learning, resource-building, and community advocacy. She is the founder of Little Dandelion Press, which creates inclusive, accessible children’s books designed for children with visual and developmental differences. Through this work, she combines her passion for early literacy with a focus on accessibility and inclusion. Rachel lives in Austin, TX with her husband and daughter Moira, and is continually inspired by the resilience and creativity of the families she serves.
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
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 KAT6 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.
Aimee Reitzen
Marketing and Communications Director
Aimee Reitzen was a founding member of the KAT6 Foundation’s Board of Directors, serving from 2017 to 2022. During her tenure, she held several leadership roles, including Director of Communications, and launched the Foundation’s website in 2017. After her son’s KAT6A diagnosis in 2016, Aimee became passionate about supporting families within the KAT6 community. She created the Empowered Grant Program, which continues to provide financial assistance for therapeutic equipment and services. Aimee has led numerous fundraising and awareness initiatives for the Foundation, including the annual KATwalk, which she co-chairs with Katie Bator. She is also a strong advocate for the use of Augmentative and Alternative Communication (AAC) in schools and communities.
Lindsey Blanch
Co-chair of Grants and Sponsors
Lindsey Blanch became involved with the KAT6 community after her youngest child, Audrey, was diagnosed with a KAT6 disorder at five months old in 2022 – a life-changing moment that sparked both apprehension as well as determination to seek answers and connection. Drawing on her background in Finance within the Oil & Gas and Semiconductor industries, Lindsey now serves as Co-Director of Grants for the Foundation. She is deeply committed to building a strong, supportive KAT6 community and advancing research — not just for Audrey, but for every family navigating the unknowns of this rare diagnosis. Lindsey lives in Houston, Texas with her husband, Colin, and their three children—Everett, Fletcher, and Audrey.
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 KAT6. 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.
Melanie Maas
Social Activities Coordinator
Melanie Maas is the proud mom of Gianna (KAT6A) and Garritt. She has attended KAT6 Conferences since the very beginning and has seen firsthand the incredible power of connection within the community. These experiences inspired her passion for helping other families connect, share their journeys, and support one another through the Foundation. Melanie is dedicated to fostering meaningful connections that bring hope, understanding, encouragement, and fun to KAT6 families. She has also been an active participant in many fundraising and awareness events, including the annual KATwalk. Alongside her husband, Rick, she enjoys cheering on their kids at soccer games and spending time outdoors as a family.
Megan Stetts
Social Media
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 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 KAT6 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 Grants
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 KAT6 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.
Beth Woodbury
Advocacy
Beth Woodbury is the mother of Sam, a 35-year-old man diagnosed with KAT6A at age 26. For much of his life, Beth has dedicated herself to advocating for medical, educational, and community services for Sam and others with disabilities in her home state of Maine. She is now an active member of the KAT6 Foundation, helping to advance scientific research and raise awareness about KAT6 disorders. Beth serves on the Foundation’s Advocacy Committee. Beth lives in the North Maine woods with her husband, David, and their son Sam. Together, they enjoy outdoor activities with their four adult children and their families.
