We are excited to announce the establishment of IDefine, a US-based organization whose mission is to discover life-changing treatments and, ultimately, cures for those with intellectual disabilities stemming from genetic disorders.
We created IDefine to further support the active Kleefstra Syndrome (KS) community where we have found support in the wake of our children’s diagnoses with this rare genetic condition. Coming together through our experience parenting children with KS and drawing on our varied professional training and skill sets, we realized together that Kleefstra Syndrome presents an excellent model to further understand mechanisms of intellectual disabilities and epigenetic regulation. We believe that starting with what we know – Kleefstra Syndrome – will offer invaluable insight into treatment and cures for others with intellectual disabilities.
Over the past 8 months, we have been planning, organizing, and discussing future opportunities with many strategic partners. We have consulted with both Hira Verma of K.I.D.S. IQ Foundation and Fiona and Chris Heslehurst of KleefstraSyndrome.org to ensure that we are unified in our efforts. Understanding challenges, celebrating victories, and charting our future is a collaborative effort that will benefit our families and all who find themselves in our shoes in the future.
As we officially begin this journey, IDefine has three areas of focus: establishing a Kleefstra Syndrome Center of Excellence, funding scientific research and development, and building a network for community outreach and support. We have opportunities to participate in communications, administrative, and fundraising efforts, and we are seeking volunteers with expertise and interest in helping to get each facet of IDefine launched. If you are interested in participating or would like more information regarding volunteer opportunities available within the organization, please contact us at Unlock@IDefine.org.
We are humbled by the opportunity to serve this community, learning from and for our children. We are stronger together, and the work we do through IDefine, for our families and those we have yet to meet, is building a brighter future for all.
Here’s to changing the world,
Andy, Darrick, Eric, Geoff and Mason