History, Mission, & Vision
History
The CureMAPK8IP3 Foundation was incorporated in Delaware in June, 2023. We received our 501(c)3 status from the IRS in April, 2024.
Mission
The CureMAPK8IP3 Foundation is a non-profit global community dedicated to improving the lives of patients and families affected by a MAPK8IP3 gene mutation. The Foundation works to raise community awareness, facilitate research, collect resources, and connect and support families.
Vision
We envision a collaborative network working to accelerate treatment and a cure. Through robust research and community support, we strive to improve our understanding of MAPK8IP3 gene function and clinical care.
Our Board of Directors Members
Board of Directors
Anne Jones — President
Anne Jones attended the University of Wisconsin-Madison, earning a Bachelor’s in Communication Arts and a Master’s in Occupational Therapy. Her son’s diagnostic journey with MAPK8IP3-Related Neurodevelopmental Disorder inspired her passion for connecting and supporting families. She is honored to help start and chair this Foundation.
Calyssa Pine — Treasurer
Calyssa Pine is a mother of five. She works full time as an assistant manager and devotes her extra time to her children and researching her daughter’s condition.
Diane Carr — Secretary
Diane Carr holds degrees in psychology, teaching, and literacy education. Her daughter Elizabeth has MAPK8IP3. Diane is passionate about lifelong learning, research, and supporting families.
Mariyana Hristova — Director
Mariyana is an engineer originally from Bulgaria who now lives in Switzerland. After her son’s diagnosis, she became deeply engaged in finding appropriate therapies and supporting the Foundation’s mission: “Where There Is a Will, There Is a Way!”
Haley Kinley — Director
Haley Kinley has a degree in Disability & Community Services and works in social services. After her son Aiden’s MAPK8IP3 diagnosis, she joined the Foundation to spread awareness and information about this rare disorder.
Marie Harris — Director
Marie holds a Master of Public Health from Yale University. She works to ensure families are represented in research, connect the Foundation with scientists, support research initiatives, and engage donors.
For inquiries about our board or serving on our board or in a short-term capacity, please contact us at connect@curemapk8ip3.org.
Scientific Advisory Board
Dr. Andrew Carter, PhD
MRC Laboratory of Molecular Biology, Cambridge, UK
Dr. Katie Drerup, PhD
University of Wisconsin-Madison
Dr. Natalia Acosta-Baena, MD, PhD(c)
Universidad de Antioquia, Colombia
Dr. Erika Holzbaur, PhD
University of Pennsylvania
Dr. Christopher Quinn, PhD
University of Wisconsin-Milwaukee
Alexa Geltzeiler, ScM CGC
Gen. Counselor, Dept. of Pediatrics, Boston Children’s Hospital
Dr. Joseph Bruno Bidin Brooks, MD
Departments of Function and Structure (J.B.B.B.) and Neurology (Y.D.F.)
UNIMES–Universidade Metropolitana de Santos, São Paulo
For inquiries about our Scientific Advisory Board or collaboration opportunities, please contact us at connect@curemapk8ip3.org.
Governance & Transparency
Policy Guidelines
We are committed to operating with the highest standards of accountability. If you have questions about our governance, please email us directly.