K.I.D.S. IQ Project is an international non-profit foundation focused on the advancement of drug treatments for reversible Intellectual Disability (ID) disorders, specifically those arising from a gene deletion or mutation. Our initial focus is on Kleefstra syndrome (KS) and related ID disorders that have a potentially synergistic approach to drug development. Such related ID disorders include:

  • ID disorders such as KS, resulting from deletions or mutations in genes encoding or interacting with components of the epigenetic machinery. These epigenetic genes play an important role in turning other genes “on” or “off,” both at the right time and in the right place within the human body. Learn more about epigenetics
  • Genetic disorders on the Autism Spectrum that also result in ID (this group represents a significant percentage of Autism Spectrum Disorder patients); KS patients, much like many other genetic disorder patient groups, commonly exhibit autistic-like features alongside ID
  • Other such ID disorder groups that may arise through scientific understanding

K.I.D.S. IQ Project also aims to enhance the quality of life for those living with such ID disorders and their associated health issues by providing important educational information, programs and services.

Learn more about ID, epigenetics and Autism Spectrum Disorder (ASD)

More About K.I.D.S. IQ Project

One of K.I.D.S. IQ Project’s initial priorities is Kleefstra syndrome (KS), an ID disorder that falls within the group of disorders involved in coding components of the epigenetic machinery. While this priority was first established byK.I.D.S. IQ Project founders to deal with their own child’s KS diagnosis, it was quickly realized that KS is, in fact, a prime target for broad-based ID drug development for a couple of important reasons. First, KS is already at a scientific stage that is ready for new drug development and testing, with specific drug targets and technologies in mind. Second, any evaluation of a potential KS drug is likely to provide relevant insights into the overall drug development process for other epigenetic machinery-related ID disorders (the group to which KS belongs), as well as other ASD-related ID disorders given a high percentage of KS patients exhibit autistic-like features. Learn more about KS

K.I.D.S. IQ Project’s efforts in other ID disorders within our scope will be focused on those disorders where, like KS, the science is at a stage ripe for drug development and pre-clinical data and potential drugs can potentially be re-applied to other ID disorders.

We accomplish our mission through our five-point plan:

  1. Drug focus: Focus on the advancement of drug development
  2. Scientific Advisory Board: A best-in-class team to provide guidance and recommendations as to which research and investment paths have the highest probability of success
  3. Global family collaboration: Maintain a group of advisors belonging to the family network to ensure family needs are being addressed and the appropriate support network is in place; develop and maintain a comprehensive and dynamic patient database and registry (contact information and health records) to assist in the advancement of research, treatment and family support; empower and enable other disease groups to participate in a collaborative effort
  4. Strategic partnerships: Scientific and medical partnerships with public or private sector organizations that can help advance our mission
  5. Fiscal responsibility: Fundraise globally with strategic partners and families (and their respective communities), all while operating in a cost-effective manner with an aim to maximize research dollars on the advancement of drug development

Fundraising & Research Progress

  • Over $1,200,000 raised to date
  • Three funded drug screening projects currently under way in the United States, Canada and The Netherlands
  • Kleefstra Syndrome drug “hit” identified and currently under further investigation