SATB2 Gene Foundation

The SATB2 Gene Foundation, Inc. was established to enrich the lives of individuals with SATB2-associated syndrome, including those diagnosed with the condition and their families, through support, research and education.  Our mission will be met by:

  • Providing support to families.

  • Supporting research in a wide range of issues related to SATB2-associated syndrome.

  • Raising awareness about the characteristics of SATB2-associated syndrome.

We are pleased to share our 2019-2021 Strategic Plan that will help serve as our roadmap.

View Strategic Plan
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Board of Directors

Allison Kaczenski graduated from the College of Charleston with a BA in Arts Management where the study of focus was nonprofit management. Mrs. Kaczenski has spent her entire 20+ year career working in the nonprofit field of fundraising, donor relations, and event planning with various nonprofits such as the Atlanta History Center, Zoo Atlanta, Special Olympics Georgia, and most recently for Emory University.

As a mother of a daughter with SATB2-associated syndrome, she wanted to help others who receive this diagnosis receive the proper support they need as well as further support research and awareness.

Casey Edwards graduated as a Doctor of Medicine in 2009 from The University of Texas Health Science Center in San Antonio and trained in the field of Obstetrics and Gynecology. Casey later left her practice of medicine to focus on raising her three children and to embrace her role as an advocate for her daughter with SAS. Casey continues to be passionate about research and education and enjoys applying her background to support the foundation.

Maya is a lawyer with both American and French law degrees. She had taught Nonprofit Law at Virginia Tech and currently works for the Ontario Government in the Ministry for Long-Term Care. She has worked for and with nonprofits in many different countries and contexts, and is excited to be able to support the SATB2 Gene Foundation’s mission. In her spare time, Maya enjoys spending time hiking and baking with her family. Maya has a young child with a SAS diagnosis and loves that the whole family is learning American Sign Language to communicate because of it.

David has been in academia since 2009, most recently as a Professor of Pharmacy at Ferris State University.  He earned his PharmD from the University of Toledo and his MBA from Ferris State University.  David and his wife Heather have two children, Lainey and Lydia.  Lydia was diagnosed with SATB2-associated syndrome in 2018.

Jenna graduated from Cairn University with her Bachelor of Social Work degree. She has always been passionate about doing work that helps others to live a better life. Until recently, her passion had been to work with individuals with eating disorders, those who had come out of human trafficking situations and teen pregnancy. When her oldest daughter was diagnosed with SATB2-Asssociated Syndrome in 2019 her passions switched to helping families navigate the ins and outs of raising a child with special needs.

One of the things that Jenna quickly realized after he daughter’s diagnosis was that there was very little information readily available for families about what programs and services were available through their state for their children. Jenna wants to do what she can to help families learn about their states programs and services and ensure that every child has equitable access to those programs and services.

Heather Green is the Director of Development at Odylia Therapeutics where she oversees fundraising. She began working in development in Metro-Atlanta in 1991 serving social service organizations and private universities. Heather has wide-ranging experience in multiple fundraising strategies both as a full-time staff person within nonprofit organizations and as a fundraising consultant. In addition to extensive work in fundraising in Metro-Atlanta and Georgia, she has worked on national cause marketing and direct mail campaigns, and international corporate sponsorships.

Heather has written (and received) grants for program support, operations, capital campaigns, and capacity building ranging from $10,000 – $750,000. She has also taught several fundraising classes and seminars including the AFP Essentials of Fundraising-Corporate and Foundation Grantseeking; AFP Essentials of Fundraising-Starting a Development Program; and the Nonprofit University-Individual, Board and Volunteer Giving classes.

Heather has a bachelor’s degree in Political Science and Sociology from the University of Michigan, a Masters of Nonprofits from the University of Georgia, and earned her CFRE in 1999.

Julie Hamburg is the Director of Patient Advocacy for Guardant Health, a precision oncology company. Prior to joining Guardant, Julie worked at Pfizer, where she managed their prescription assistance programs and helped patients navigate access and affordability challenges.

Throughout her career, Julie has worked to advocate for patients’ needs. In 2017, that work became personal, when Julie’s daughter, Lila, was diagnosed with SATB2-associated syndrome (SAS). Julie is excited to bring her love of advocacy and communications to the SATB2 Gene Foundation to build further awareness, connections, and support for those impacted by SAS, and to ensure their collective voice is heard.

Julie holds a BA in Psychology from the University of Virginia and a Master’s in Public Health from Columbia University.

Nicole Johnson is a full-time paramedic in her local residential area. She has an educational background and holds a B.S. in Biochemistry and Molecular Biology as well as a B.S. in Secondary Education. She is a SATB2 parent and represents and supports the foundation as the parent liaison.

Bill recently retired from the State University of New York at Buffalo (UB) after 39 years, serving as the director of university events during the last 27 of those years.  His areas of expertise include project management, program development, budgeting, and sponsorships.  Bill earned his BA & MBA from UB.  He is a current board member of two local foundation boards.

Bill and his wife Terry have three adult children.  Their oldest is Lindsay, born in 1989, who was diagnosed with SATB2-associated syndrome in 2017.  Lindsay continues to live at home with her parents and attends full-time day programming through People Inc.

Medical and Scientific Advisory Board

Dr Yuri Zarate is a Clinical Geneticist and an Associate Professor at the University of Arkansas for Medical Sciences and Arkansas Children’s Hospital. In 2014, Dr Zarate started a research project that led to a report with the first cohort of patients with SATB2-associated syndrome (SAS). From there, he established a strong-long lasting relationship with the support group for this rare condition, created the initial dedicated SAS website (http://satb2gene.com/), and launched the only available clinical registry for this syndrome. Through his leadership, Arkansas Children’s Hospital hosted multidisciplinary international SAS clinics in 2017 and 2018 and will continue to be the only dedicated clinic in the United States to offer routine care for this population. Dr Zarate has published extensively on different aspects regarding this syndrome and activity leads and collaborates on several ongoing SAS-related research projects.

Dr. Jennifer Fish is an Assistant Professor at the University of Massachusetts Lowell (UML), where she teaches Developmental Biology and Comparative Vertebrate Embryology. Prior to arriving at UML, she trained at King’s College London and the University of California San Francisco. Dr. Fish has been researching the roles of SATB2 in development since 2008 using animal models of disease. Her research involves in vivo assays (in the mouse model system) and in vitro studies on osteoblasts (bone cells) and neurons. Additionally, through involvement in the SATB2 Gene Foundation, Dr. Fish’s lab is using SAS patient-derived induced pluripotent stem cells to further investigate disease mechanisms and treatments.

Dr. Barber Tinselboer is a physician for people with Intellectual Disabilities (ID). In the Netherlands, this is a medical specialty, created to provide better medical care to people with ID. Her work is comprised mostly of treating the comorbid conditions in people with ID like epilepsy, behavioural issues, psychiatric disorders and additional physical problems. She works at ‘s Heeren Loo in Apeldoorn, an organization that provides care, services and treatment for people with ID. She also has a son with SATB2-associated syndrome.

Ashlen Thomason, Ph.D., CCC-SLP, is a member of the outpatient speech pathology team at Arkansas Children’s Hospital. She is a graduate of the Arkansas Consortium for the Ph.D. in Communication Sciences and Disorders with a major research emphasis in stuttering and minor in cleft palate. Ashlen is an adjunct instructor for the University of Arkansas for Medical Sciences Department of Audiology and Speech Pathology graduate program teaching Fluency Disorders and supervising student clinicians. She is the director of the Arkansas Stuttering Network, a non-profit organization designed to elevate the level of care available to Arkansans who stutter.

International Partners

The SATB2 Gene Foundation is an international organization that supports all families living around the globe, through a unified approach to ensure that we succeed in achieving our mission and vision for all families living with SATB2-associated syndrome. Together, we continue to collaborate and provide support of our families, educating the world about SAS, and furthering research.

SATB2 Gene Foundation Australia
SATB2 Europe
Association Francaise Du SATB2 (France)
SATB2 Italia associazione onlus (Italy)
SATB2 Stichting Nederland en Belgie (Netherlands and Belgium)
Asociación del Síndrome Asociado al SATB2-SAS (Spain)
SATB2 Gene Trust UK

Membership Information

The SATB2 Gene Foundation is a proud member of the Global Genes Foundation Alliance and COMBINEDBrain.

Global Genes Foundation Alliance is an organization who advocates, partners and collaborators who are relentless in our efforts to affect change. They do this to eliminate the daily challenges for 1 in 10 people affected by rare disease. They empower patients, build communities & drive forward momentum for rare disease globally. Global Genes’ mission is to connect, empower and inspire the rare disease community. They envision a globally connected community equipped to eliminate the challenges of rare disease.

COMBINEDBrain (Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders) is a consortium led by patient advocacy foundations, working with the clinicians, researchers and pharmaceutical firms that are developing treatments for the disorders they represent. They are devoted to speeding the path to clinical treatments for people with severe rare genetic non-verbal neurodevelopmental disorders by pooling efforts, studies and data.

EURODIS is a non-governmental patient-driven alliance of patient organisations representing 962 rare disease patient organizations in 73 countries.  EURODIS seeks to improve the quality of life of people living with rare diseases in Europe through advocacy at the European level, support for research and medicines development, facilitating networking amongst patient groups, raising awareness, and many other actions designed to reduce the impact of rare disease on the lives of patients and family.

National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 300 patient organization members,  is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

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