October is Rett Syndrome Awareness Month.Out of curiosity I visited http://www.awarenessdepot.com/awarenesscalendar.html to see what other issues also have October as their awareness month. I knew that Breast Cancer, Celiac Disease and Down Syndrome have October was their Awareness month, but was surprised to learn that it’s also Elephant Awareness month. So I then began to think about what Awareness means. Webster’s dictionary defines Awareness as: knowing that something (such as a situation, condition, or problem) exists : feeling, experiencing, or noticing something : knowing and understanding a lot about what is happening in the world or around you. I know that many people are still unaware of what Rett Syndrome is so I began posting facts about Rett Syndrome on my Facebook page and sharing information when I’m out with Tabby. While at a music festival recently Tabby saw a band named Mike Hicks and the FUNKtional PUNCtuation and she began trying to clap to the music which is very difficult due to Rett Syndrome. I decided to take her to meet Mike and share what his music inspired her to try. He was trilled and as I told him more about Rett Syndrome he was interested in knowing more about what he could do for Tabby. I told him about the fundraiser to purchase Tabby a running chair and how this would allow us to raise money to find a cure for Rett Syndrome. Mike and his band immediately donated the remaining $400 needed to purchase the chair. When I told Tabby’s mom the good news she asked “why would someone do that for someone they just met?”. This made me think. Mike and his band put their Awareness in Action. This Action along with those of the others who donated to her fundraiser made them Allies with Tabby in her fight with Rett Syndrome.
This Action increased my desire to spread Awareness so that others will be moved to take Action and come together as an Alliance against Rett Syndrome. Webster’s dictionary defines Alliance as: the state of being joined in some activity or effort : the state of being allied: a relationship in which people agree to work together. Over then past year I have begun connecting with others via social media that love someone with Rett Syndrome. Some of these are family members, some caregivers, and some friends, but together we are an Alliance. I like to say we are family by bond instead of blood.
The most important part of having this Alliance is that we can Advocate for those with Rett Syndrome. Advocacy is defined as: the act or process of supporting a cause or proposal : the act or process of advocating something. An Advocate is : a person who argues for or supports a cause or policy: a person who works for a cause or group. Since most Rett Syndrome sufferers have lost their ability to speak having a someone to speak “for” them is extremely important. I believe that anyone who takes the time to connect with a Rett girl and/or woman would be inspired to become an Advocate and make sure these voices are heard. Among those that I have met in the Rett community one stands out; his name is Duncan Millar. Duncan volunteers his time and talent to create beautifully captioned images from the over 1500 photos sent to him from those who love a Rett girl/woman. He has assisted these girls/ladies in having a voice with his blog http://armyofus.org/blogs/duncan/ and https://www.facebook.com/Armyofus . He is Godfather to a girl with Rett Syndrome. Through his work in “Army of US” he has reached the hearts of those around the world. With this growing Army against Rett Syndrome we come closer to a victory, a cure.
There are so many ways to join us in the fight against Rett Syndrome all it takes is to do more than be aware. Take Action- Donate to research toward finding a cure http://www.rettsyndrome.org/make-a-difference/donate-now. I realize that for many making a financial contribution is not possible so I’m asking you to make a different type of donation. Make a donation of your time, your heart, and your friendship. Join other Allies and help with fundraisers or go to http://www.girlpower2cure.org/how-to-help.aspx to see how you can help. Be an Advocate. Find out how you can meet a Rett girl/woman and take her to the park or to dinner. Send a note of encouragement to someone with Rett or their families to let them know you care. Host a girls night in where you invite your friends and Rett girls/ladies for a night of watching movies, painting your nails, and just hanging out. There are so many ways you can help that don’t require anything expect your willingness to care and some of your time. Believe me when I say that not only will you be helping those with Rett Syndrome you will be helping yourself to see the things you take for granted. Being Tabby’s best friend has changed by life for the better and made me appreciate every day.