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
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
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
Co Founder
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.
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.
Emily Martinez
Board Member
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.
Kyle Schneider
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.
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©(3) charitable organization. Our EIN – Tax Number is 87-2737121.