Ask HN: How to raise funds for rare disease research?

If that’s okay I would like to ask the HN community for their advice on a personal matter. My beautiful daughter Nil (3yo), has a rare genetic disorder called Kleefstra Syndrome (KS). She cannot walk or talk at this point. Doctors believe she will walk eventually, but speech they are not so sure about. KS involves partial chromosome deletion (or sometimes mutation) of a particular gene, EHMT1, which in turn causes a protein called GLP not to be produced. Moderate to severe Intellectual disability, limited/absent speech are some of the symptoms. KS was first “discovered” in 2010. Thanks to “whole genome sequencing”, it is now possible to diagnose KS with a single draw of blood. Maybe that’s why we are hearing about KS kids more often in our community. We have a non-profit foundation based in the US ( https://www.idefine.org ) to improve awareness and lead/fund potential research for KS. Also, there are already two active pieces of research that provide potential impr