Many believe only Rett families can lead the effort in fundraising. One person said to me “Rett is too rare. No one else will do this.” 

The disease ALS (1 in 50k births) is FIVE TIMES more rare than Rett (1 in 10k births) and donations to the ALS Association went up by $20m a year after a viral awareness campaign we all know as the ice bucket challenge. 

Recently, a major Rett charity made the statement that they are “not fans” of awareness month and you can follow ? THIS LINK ? for the most convincing data you will ever need for why awareness month is the most important month on the Rett syndrome calendar. 

It’s what we in marketing would call a tent pole event.