Rett Syndrome is not unique for having most of its funding come from the networks of affected families. I was talking recently with my counterpart at a well-known organization that raises funds for disease-specific research (a disease that has a lot more name-recognition than Rett Syndrome and an organization that has star power as well). I asked her if they get funding from sources other than affected families and their networks. Her response—only a tiny portion of their funding comes from donors who aren’t connected to an affected family.
All this underlines to me that we can’t wait for or rely on big foundations or corporations to take our research to the next level. We, families that are impacted by Rett, have to take charge. I’m not saying we have to fund it all ourselves. But we all can get our networks—our friends, our aunts and uncles and cousins, our mechanics—to help support this cause, and events are a natural way to do that. If 20 or 30 or 40 more families start events that inspire their networks to give, we can grow our funding exponentially and move the research faster to the stage where it will change our daughters’ lives.
If you are a family affected by Rett Syndrome and you are not already involved in an event or fundraising for RSRT, please call or email me to brainstorm ideas for starting your own event. Thank you so much.