Inspired by the birth of his special needs daughter Natalya in 2012, Andy co-founded two charities to seek a cure for those with intellectual disabilities, starting with Kleefstra syndrome (KS), a rare genetic disorder impacting the EHMT1 gene on the 9q34.3 chromosome. Most recently in 2020, he and four other co-founders established IDefine as a 501(c)(3) to identify life-changing treatments and cures for KS by funding critical research and raising awareness for other rare genetic conditions as well.
By sharing information, advocating for research, and pooling resources, IDefine strives to unlock the potential of individuals living with intellectual disabilities such as Kleefstra syndrome. Prior to IDefine, he co-founded KIDSIQProject, a Canadian charity with a partner in Toronto who had a KS son with a similar mission and collectively both organizations have raised over $5M in research funding.
What began as a deeply challenging personal journey for Andy and his family for a rare known syndrome with only 200-300 known cases at the time, has now grown into a robust global platform connecting researchers, families, and donors with over 1,100 cases documented in a patient registry. Together with the board members of IDefine, the collective KS community is passionate about bringing hope to those without a voice and seeking a cure, so please feel free to reach out to Andy if you share expertise in the rare disease sector.