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Kyle Arkilander's Fundraiser:

Kleefstra Syndrome Drug Development

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Kyle Arkilander

THE STORY:, an international non-profit foundation, is raising money to fund scientific research projects aimed at advancing a drug treatment for Kleefstra syndrome (KS). KS is a rare genetic condition caused by a mutation or deletion of the EHMT1 gene. KS patients have intellectual disabilities, speech impairments and various other neurological and physical abnormalities, including walking difficulties, heart defects, kidney/urological defects, respiratory infections and seizures. There is no treatment today, however, scientists do know enough to begin working towards developing a drug. Funding is the biggest hurdle and, as such, your donation and support can put a treatment within reach.

From September 17-25, 2016, will host its first annual virtual "Walk-and-Roll". Families affected by Kleefstra Syndrome will walk or roll (wheelchair, stroller or cycle!) their way across a self-designated 5K (3.1 miles) route in their local communities. Proceeds raised will go towards developing a drug to treat KS. Consider a donation on this page or start your own fundraising team by clicking on the "Start Your Fundraiser" button.

All donations from Canadian taxpayers are tax deductible and receipted by email. is a “doing business as” name for International KS Foundation, a Canadian registered charity with BN/Registration Number 820787992RR0001.

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