June 29-July 1, 2018: 2018 Kleefstra Syndrome Conference and Walk & Roll
Over 200 people joined together to learn about the latest science surrounding Kleefstra Syndrome, including updates on existing drug treatment research as well as high-potential projects for the future. The weekend also included presentations on how to build an effective healthcare team for your KS family member and the hidden relationship between genetic screens and medication. This conference was also a unique opportunity for KS families to come together and share their experiences through family discussion periods and social events like the KS walk & Roll – a group awareness walk.
More details available at Events and Webinars
January 30, 2018 (Past Webinar): Intro to Applied Behaviour Analysis (ABA) Therapy
ABA is a therapeutic approach that uses the principles of learning to teach important social behaviours and improve the overall quality of life for your child. Learn how ABA therapy can have great results for children living with an Intellectual Disability syndrome, such as Kleefstra syndrome. View the recorded webinar or download the updated slides (PDF).
December 22, 2017 (Past Webinar): Pharmacogenetics – Using Genetics To Improve Drug Effectiveness
Did you know that the same drug can have a different effect on different people based on their genetic profile? Watch our webinar as we discuss how this knowledge can help us improve drug effectiveness – especially for those with Kleefstra syndrome. View the recorded webinar or download the updated slides (PDF).
November 14, 2017: K.I.D.S. IQ Project Second Annual Benefit
K.I.D.S. IQ Project hosted its second Annual Benefit in support of new drug therapies for Intellectual Disability disorders. With the wonderful support of our event sponsors and generous donations on the night of the event, we raised over $300,000!
October 7-15, 2017: Second Annual Kleefstra Syndrome Global “Walk & Roll”
K.I.D.S. IQ Project hosted its second annual global Walk & Roll. People from around the world participated in planning a walk in their own community to raise awareness about Kleefstra Syndrome. At the close of the event, our combined efforts raised close to $100,000! A huge thank you to all participants and congratulations on another great year.
September 20, 2017 (Past Webinar): Drug Repurposing – How A Drug Approved For One Disease Can Be Effectively Used To Treat Another
Learn about the opportunity to take drugs already approved for one illness and repurpose them to a new target illness. In this webinar, we discussed why this is a viable strategy for Kleefstra Syndrome in addition to why additional testing is required. View the recorded webinar or download the slides (PDF).
August 8, 2017 (Past Webinar): Drug “Hit” Identified In KS Screening Using iPSC
Learn about the exciting drug “hit” identified by our Netherlands research partner using iPSC technology. This is likely the first time in history that a specific compound has been shown to improve or reverse Kleefstra Syndrome in a lab environment. View the recorded webinar or download the slides (PDF).
October 3, 2014 (Research): Drug Treats Inherited Form of Intellectual Disability (external website)
April 3, 2014 (Research): New hope for treating ALS (external website)
January 4, 2011 (Research): Epigenetic Regulation of Learning and Memory by Drosophila EHMT/G9a (external website)