Welcome to IQSEC2.ORG

Research and Advocacy Foundation

Rami

MISSION STATEMENT

Our mission is to accelerate research towards a cure for IQSEC2 associated disabilities and to empower families to obtain optimal care, resources, community, and knowledge for their affected loved ones.

Vision

In the next 10 years, we will dramatically improve the quality of life for those affected by IQSEC2 mutations through

1) the establishment and dissemination of standard treatment and therapy protocols to medical practitioners and therapists worldwide,

2) support of research and development of new and innovative treatments for IQSEC2 related diseases, and

3) uplift (support) all loved ones of those affected by IQSEC2 through an advocate community and its allies. 

Parent Guide for IQSEC2

Thanks to everyone who joined the IQSEC2 Research & Advocacy Foundation Q&A session. For anyone who missed it, here is the recording. You can see the chat details through the same link (Q&A session):
Q&A session

Research

To see the latest on our focus areas
Dr. Andrew Levy

Dr. Andrew Levy

Born in New Haven, Connecticut. Graduated Yale University Summa Cum Laude Phi Beta Kappa in Molecular Biophysics and Biochemistry.
Learn more
Zhanna Ullman

Zhanna Ullman

Zhanna is a mother to two children and one dog, a wife, a senior manager of Program Management at a software company, and a founder of the IQSEC2 Research & Advocacy Foundation.
Learn more
Todd Pottebaum

Todd Pottebaum

Todd Pottebaum, is president of Quality Resource Group (QRG), a branded merchandise and print agency headquartered in the upper Midwest of the United States.
Learn more
Michele Mosa Patel

Michele Mosa Patel

Michele Mosa Patel is proud mama to Rami and feels very lucky to have her husband and life partner, Mitul, by her side on this winding journey we call life.
Learn more
Vassia Papadopoulou

Vassia Papadopoulou

Vassia Papadopoulou is the Director of Studies and a Board Member at Platon School in Athens Greece.
Learn more

Parent Guide for IQSEC2

This guide is designed to help families and healthcare professionals looking after people affected by IQSEC2-related disorder. It contains information about the cause, the ways in which it can affect people and suggestions about the help and management that can benefit people with this disorder. It also contains details about support groups and further information that families can access.
Parent Guide

Contact us

Feel free to contact us