The Christianville Spirit: The Naming of PTLS Remix

The Christianville Spirit

The Spirit that Fills Your Heart & Lifts You Up

March 6, 2013-TCS # 341

So, Every now and then, I like to look through My Records of printed old newsletters, most of the time to see what was going on in My Life at that particular time. So, Around late February and Early March, I always try to remember when PTLS was named. Every Time I look back, I go to the first mention of it, which was a Newsletter written on March 8, 2007. The funny thing is that From My Memory, I can tell you about how I found out about it’s naming. Before it was named, I just addressed it as “A Duplication of Chromosome 17,” even though I didn’t know what a “Chromosome” was or really, how to explain what I had. But, I remember how I was told about “Duplication of Chromosome 17” becoming “Potocki-Lupski Syndrome(PTLS).” Here is how it went, I remember that My Mom picked me up from School (this was in Senior High School, by the way) and after we pulled out onto the street and started driving home, My Mom told me, “Hey, Guess What?” and I said, “What?”. My Mom continues, “So, I got an email from Houston, Dr. Potocki, and Your Syndrome..has been named Potocki-Lupski Syndrome. It’s was named after Dr. Potocki & Dr. Lupski, Isn’t that exciting?!?” At that time, I was little bit excited but, I had a little trouble understanding it because I didn’t know if it had been named before. It took a while for me to process and understand, but I did get excited about it. After I learned about the name, I wanted to tell everyone and share in the celebration. Now that PTLS has been named, I mention it with much better ease than I did before because People know more about What I’m Talking About. Also, It’s given me PTLS Family Members (formally known as just “The Families”) around The World. As a Result, for now, We’re calling March, PTLS Awareness Month which is great because it coincides with Autism Awareness Month and Spread The Word To End The Word Day (or STW Day, for short) which is Today actually. All in all, though The naming of PTLS is just as special as having PTLS.

Thanks for Reading The Christianville Spirit. Celebrate Every Day that You Wake To.     



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