Seeing Purple in October for Rett Syndrome Awareness Month

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by Jackie Babiarz |

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Ribbons of various colors help to increase social awareness of numerous disabilities, illnesses, and causes. Purple is the color designated for Rett syndrome.

Governors in several U.S. states have signed proclamations declaring October to be Rett Syndrome Awareness Month. The International Rett Syndrome Foundation (IRSF) has set a goal to obtain proclamations in all 50 states to solidify unity around the cause.

As we approach October, one simple activity organizations and families can plan is posting a fact on social media about Rett syndrome every day of the month. By the end of October, friends, family, and followers will have learned 31 facts about Rett syndrome.

I’ve found that adding a photo of my daughter, Cammy, who has Rett syndrome, to the posts helps to have greater impact. For example, children start to lose hand skills during the early-onset stage of the disease, which typically occurs between 6 and 18 months. So, when stating this fact, I’ll add a photo of the last time Cammy held a bottle by herself.

Rett Syndrome Awareness Month / Rett Syndrome News / Photo of Cammy at 54 weeks old lying on a pillow and holding her bottle.

The last time Cammy could hold a bottle by herself was in 2010, when she was 1. (Photo by Jacqueline Babiarz)

For a global initiative called Light Up the Night, IRSF is asking for prominent structures to be lit up with the color purple on Oct. 29. We participate the entire month on a smaller scale at our house. Switching your home’s outdoor lightbulbs to purple is an inexpensive and fun way to spread Rett syndrome awareness and increase exposure.

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The most fun way we have found to display shades of purple has been to encourage people to paint their toenails.

A year after Cammy was diagnosed, we had a Purple Piggy Party with our entire family. Aunts, uncles, and cousins all painted their nails varying shades of purple. Another year, our youngest daughter, Ryan, painted all of the male neighbors’ toenails while the women had theirs professionally painted.

We’ve done it differently each year, but the response has always been overwhelmingly positive. Family, friends, and social media followers show their support by posting photos of their purple piggies on our Cammy Can Facebook page. Such a simple act generates awareness.

Rett Syndrome Awareness Month / Rett Syndrome News / Photo of Cammy wearing a purple shirt and sitting in a circle with her cousins, whose toenails are all painted purple.

Cammy is surrounded by her cousins’ purple toenails in October 2012. This gesture supports her with each step they take. (Photo by Jacqueline Babiarz)

Whether it’s by sporting purple nails, switching a social media profile photo to a picture of Cammy or our Cammy Can superhero, or wearing a Cammy Can shirt a few more times during October, we appreciate every gesture that increases awareness.

Follow along with our journey at cammycan.blogspot.com.

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Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.

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