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Awareness is Not Enough

October 10, 2019

I’ll let you in on a secret. I’m not a big fan of Rett awareness month. I think it’s because I’ve never really understood the goal of awareness. Is it to make sure that as many people as possible know what Rett Syndrome is, or is it to raise research funds?

I often hear the argument that if we increase awareness, research funds will naturally follow. My experience suggests it’s not that easy.

When I started the first of two non-profits in 1999, the Rett Syndrome Research Foundation (RSRF), people kept encouraging me to watch the movie Lorenzo’s Oil which debuted in 1992 starring Nick Nolte and Susan Sarandon. The movie, which received many accolades including academy award nominations, told the real life story of Augusto and Michaele Odone and their search for a cure for their son’s adenoleukodystrophy.

The end of the movie featured a plea for donations to the research foundation started by Augusto, the Myelin Project. In early 2000 I spoke with Augusto and was shocked to learn that the movie generated a pittance for research – my first hint that simply raising awareness did not equate to raising money.

Rett Syndrome had its own documentary the following year, narrated by mega superstar Julia Roberts herself. (Julia’s sister was friends with a NYC family who had a daughter with Rett, hence the connection.) Julia’s involvement with Rett didn’t end with the documentary. On May 9, 2002 she went to Congress for an emotional appeal asking for increased funding for Rett. Awareness that day went through the roof with news organizations around the world showing footage of the testimony. RSRF’s website crashed as a result of so many people visiting our site. End result, no new funding for research from Congress and no uptick in donations.

In 2011 RSRT ran its own awareness experiment. We ran a public service announcement (PSA) in the iconic Time Square. The PSA ran an average of nine times an hour, 24/7, for three months during peak holiday season, November through January, including New Year’s Eve. I was skeptical that it would raise any money but through a connection we were able to run it for free. Bottom line, not a single donation attributed to the PSA.

I can go on and on with examples but I think you get the picture.

Today is my daughter's birthday, she is 23 years old. She is getting worse as Rett symptoms ravage her little body. If every person on this earth knew what Rett Syndrome was but didn’t donate, it wouldn’t help Chelsea's symptoms one bit.

So for this Rett awareness month, make your awareness efforts count by including a call to action – a donation to the Rett Syndrome Research Trust – in support of high quality research focused on the root cause of the disease.