About Us

Our Mission

We envision a world in which individuals with the STAG1 gene mutation are known, valued, and equipped to meet their greatest potential. We will do this through education, advocacy, support, and research including:

• Raising awareness about the characteristics, resources, and management of the STAG1 syndrome.

• Providing support to STAG1 gene individuals, their families, and concerned other parties.

• Supporting research in a wide range of issues related to the STAG1 gene mutation.

Our Founders / Board

We strive to surround ourselves with people to help us grow our vision and improve our processes. We seek to build and maintain a Board of Directors with a wide range of experiences, competencies, and perspectives.

Angela Schneider

Angela Schneider

Co Founder / President, Treasurer

Angela received her Bachelors of Science from Grand Valley State University. She is based out of Kalamazoo, MI with her husband, daughter, and two boys with the STAG1 Gene mutation. Being an advocate and voice for her sons has become her greatest joy.

Alyssa Williams

Alyssa Williams

Co Founder / Vice President

Alyssa received her Bachelor of Science in public relations from Missouri Southern State University. She lives in Baltimore, MD with her husband and three children. Her oldest son has the STAG1 gene mutation. Advocating for her son and bringing awareness to the community has become her greatest passion.

Dr. Carrie Kremer

Dr. Carrie Kremer

Co Founder / Board Member

Dr. Kremer receiver her undergraduate degree from Concordia University Chicago, her Doctor of Medicine degree from the University of Minnesota, and did her Obstetrics and Gynecology training at the University of Florida. She lives in Lakeville, MN with her husband and three children. Her youngest daughter has the STAG1 gene mutation. It is her passion to advocate for her daughter and to bring special needs families together.

Emily Martinez

Emily Martinez

Board Member

Emily earned her bachelor of science in interdisciplinary studies from Sam Houston State University. She lives in Houston, TX, with her husband and three children. Her middle daughter has the STAG1 gene mutation. It is her passion to be the voice for her daughter and bring awareness to the community.
Karissa Gretebeck

Karissa Gretebeck

Board Member

Karissa received her Bachelor’s Degree in Communications and Business Administration from Carthage College.

She currently works as the Manager of Volunteer and Community Engagement at United Way of Greater Milwaukee and Waukesha County.

Karissa lives in Wauwatosa Wisconsin, just outside of Milwaukee with her husband and two daughters. Her youngest daughter, Elsie, has both the STAG1 mutation and a rare endocrine condition called Hyperinsulinism.

Sharing her family’s experience and supporting others navigating similar waters, is her greatest passion.

Michelle Senn

Michelle Senn

Secretary

Michelle is currently working as a Program Manager in Enterprise Associate Learning & Leadership. She has over 28 years of experience at Walmart recently holding titles of Executive Assistant and Program Manager in International. Serving on the Walmart Associate Council of Corporate Giving for four years, a funding steering committee, ignited her interest in supporting numerous non-profit organizations.

Her children and grandchildren are her world – with daughter and son-in-law Alyssa & Brandon Williams, grandchildren Ryder, Nash, & Rami Williams – and son Ryan Karel.

Scientific & Medical Advisory Board

Our goal to form the Scientific and Medical Advisory Board is to recruit clinicians and scientists already active either directly with STAG1 or on STAG1-adjacent disciplines (i.e. Cornelia de Lange, Cohesionopathies). The MSAB will be able to evaluate patient data from a medical registry to recommend treatment as well as identify areas in need of active research. The STAG1 Gene Foundation will work with the MSAB to identify scientific groups with the capabilities to perform research in these recommended areas. This will addresses both the need for physician care and that of research to help develop the characterization of STAG1.

Philip Boone, M.D. Ph.D.

Philip Boone, M.D. Ph.D.

Dr. Boone is an attending physician in the Division of Genetics and Genomics at Boston Children’s Hospital and an Instructor at Harvard Medical School. He co-directs the Cornelia de Lange Syndrome (CdLS) and Related Disorders Clinic at Boston Children’s, where he sees patients with CdLS and other conditions related to cohesin genes (e.g. STAG1). Dr. Boone conducts his laboratory work as a research fellow in the Center for Genomic Medicine at Massachusetts General Hospital. There, he studies cohesin-related conditions to understand their basic biology and therapeutic vulnerabilities.
Kyle Schneider, Ph.D.

Kyle Schneider, Ph.D.

Kyle received his undergraduate degree from Grand Valley State University in biochemistry, M.S. from Yale University in molecular biophysics and biochemistry, PhD from Northwestern University in molecular biology. He completed his research fellowship at Genentech in antibody engineering. He works as a Scientist in Kalamazoo, MI.

Jillian McLaughlin, DO.

Jillian McLaughlin, DO.

I am a full-time mom of two exceptional boys, a board-certified pediatrician, and an advocate for children with special needs. I completed my undergraduate and medical school training at Nova Southeastern University College of Medicine and my pediatric residency training at Connecticut Children’s Medical Center. I have worked and taught in various pediatric settings, including a community-based clinic, newborn nursery, chronic care facility for medically complex children, and a private practice. Early in my career, I developed a special interest in developmental and behavioral pediatrics, as well as the care coordination of children with medical complexity. Over time, I became even more motivated to help families make connections as they faced challenging and rare diagnoses for their children. I consider it a privilege to serve the community as a parent and pediatrician who understands what other parents are going through.

Partners

Being a rare disorder we strive to collaborate with others in regards to research, community, and like minded values to help us progress our mission statement. Please contact us for any questions at info@stag1gene.org.

Our foundation received support from the National Organization for Rare Diseases (NORD) through their RareLaunch program.

Transparency

We strive to be transparent in our actions, successes, and financials. The STAG1 Gene Foundation was founded in 2021. We are a 501(c)(3) charitable organization. Our EIN – Tax Number is 87-2737121.