The Advent Season is upon us. Those who know me well or have followed my blog for a while are aware of the personal tradition I started a few years back when I decided to Fight the Establishment. In some ways, this is my own Occupy Wall Street movement, but in my opinion following this idea is far more realistic to bring about a positive change for those in need.
Three years ago, I discovered that Americans spend over $450 billion on Christmas gifts each year. Now, I have no breakdown for the one-percenters spending versus the working class citizen, but according to the American Consumer Credit Council, the average American spends $925 on Christmas each year. Also, a Gallup poll found that 36 percent of shoppers thought this spending to be a chore-like activity.
It was that Holiday season of 2008 when I changed my personal practice for Christmas. I still bought gifts for my family and close friends; however, I asked everyone who would spend even $5 on me for a card to take a different action instead. I realized that I didn’t need the esteem of knowing someone cared by receiving a trinket. Most things I received at Christmas-time were items I rarely used or cards I would throw away. Instead I asked those who wanted to give me a gift to donate the equivalent money to a worthy charity, the Rwanda Clean Water Project.
If there is something I want, I have the means to get it. However, many people in Rwanda go without clean water on a daily basis. And for that $5 card/gift spent on me, one more person can have drinkable water for life if it were donated to this cause.
However, this year I would like to add another cause to the list, should someone wish to donate in my name for Christmas. A new charity I have taken on is the International Rett Syndrome Foundation. Rett Syndrome is debilitating genetic, non-hereditary disease that affects around 4000 girls in the United States alone. And those are the ones who have been properly diagnosed, but the actual number is estimated to be 1 in every 10,000 girls around the world.
The affliction, a mutation on the MECP2 gene, prevents proper neurological development in young girls. Because it is on the X chromosome, boys rarely survive beyond a few weeks after birth. Girls, however, have 2 X chromosomes, allowing a back-up gene for development and permits them to live, but this compensation leaves them with a range of neurological issues. Because each girl has her own unique genetic set, her symptoms are different and specific to her. However, common drawbacks include slowed development, the loss of purposeful use of the hands, stunted physical head and brain growth, problems walking, seizures and the inability to speak.
I know there are many horrid diseases and worthy research causes to which one can donate. I have heard others say that in syndromes such as Rett, the money is just prevention-style research to find ways to identify the disease and stop it for future generations, but donations do not really help those currently stricken with it. This is sometimes the excuse not to give. However, I want to dispel that type of thinking if anyone reading this is of similar mind.
In 2007, Dr. Adrian Bird announced the reversal of Rett syndrome symptoms in a mouse model. In afflicted mice the treatment allowed breathing and weight to normalize, mobility and gait to restore and tremors to cease. More importantly, this treatment appears to be reversible even in the late stages of the disease. This means young girls who are affected today might be restored to normal lives with further research and funding.
I personally know a young girl, almost five years old now, who has Rett Syndrome. At one time, she was to become my step-daughter. But regardless of familial status nor whether she is ever cured or not, I will always have love in my heart for this beautiful angel. However, if I had the power, I would give her the cure, but I can’t do it alone. This is why I have added the IRSF to the list of charities I support and ask others to donate to it instead of buying me a Christmas gift. The small trinket to let me know I’m loved is nice, but that same money spent to restore the quality of life for this little girl (and others like her) would mean much, much more to me.
Please keep this in mind when making out your shopping list this season. Also, please consider asking your friends and family to forego the gift-giving to you and to donate in your name to this cause instead.