The Christianville Spirit
The Spirit that touches Your Life
July 1, 2009- TCS # 154
If you have been reading this newsletter for a long time, then you know that I have special needs, I have what is known as Potocki-Lupski Syndrome (or duplication 17p11.2) anyway, this past weekend was a big milestone for Potocki-Lupski Syndrome and The PTLS Union. You see, on Friday June 26, 2009 was the inaugural PTLS Conference in Houston, TX at Texas Children’s Hospital. Anyway, this conference was awesome because a lot of families showed up to the conference, more than I had expected. In fact, the whole thing was more than I thought it would be. The conference consisted of a whole day of talks from experts about this and of course I got to meet a ton of families; but, I’ll get to that later. Anyway, even I learned new things about Potocki-Lupski Syndrome. Like for instance, there’s a gene in PTLS that protects against cholesterol which I kind of thought was cool and funny. However, (and, this surprised me) that PTLS kids have extra long intestinal tracks which cause them to have constipation. Also, they say that you should keep watch on your PTLS child’s Connective Tissue because apparently this is an issue. The doctors learn a lot from our mouse model that has PTLS. I’m anxious to find out more about the adult mouse because that would help me. Now, the family part of it; There were a lot of families there that were around the world like there’s a family from The Netherlands, two families from England, one from France, and the rest from the United States. But, the thing that I was most surprised by were how many comments I got about this newsletter and I didn’t realize how many people are reading this newsletter. That really makes me very happy. I want all the families for both reading this newsletter and for talking to me. And, if I didn’t get to you and you were there, I’m sorry I didn’t get to talk to you. But, I do want to thank you for at least coming. My Mom and I have waited many years for this conference and I’m glad you got to come and if you didn’t get to come, I can’t wait to meet you sometime soon. All in all, the conference was awesome and a historical day.
If you have been reading this newsletter for a long time, then you know that I have special needs, I have what is known as Potocki-Lupski Syndrome (or duplication 17p11.2) anyway, this past weekend was a big milestone for Potocki-Lupski Syndrome and The PTLS Union. You see, on Friday June 26, 2009 was the inaugural PTLS Conference in Houston, TX at Texas Children’s Hospital. Anyway, this conference was awesome because a lot of families showed up to the conference, more than I had expected. In fact, the whole thing was more than I thought it would be. The conference consisted of a whole day of talks from experts about this and of course I got to meet a ton of families; but, I’ll get to that later. Anyway, even I learned new things about Potocki-Lupski Syndrome. Like for instance, there’s a gene in PTLS that protects against cholesterol which I kind of thought was cool and funny. However, (and, this surprised me) that PTLS kids have extra long intestinal tracks which cause them to have constipation. Also, they say that you should keep watch on your PTLS child’s Connective Tissue because apparently this is an issue. The doctors learn a lot from our mouse model that has PTLS. I’m anxious to find out more about the adult mouse because that would help me. Now, the family part of it; There were a lot of families there that were around the world like there’s a family from The Netherlands, two families from England, one from France, and the rest from the United States. But, the thing that I was most surprised by were how many comments I got about this newsletter and I didn’t realize how many people are reading this newsletter. That really makes me very happy. I want all the families for both reading this newsletter and for talking to me. And, if I didn’t get to you and you were there, I’m sorry I didn’t get to talk to you. But, I do want to thank you for at least coming. My Mom and I have waited many years for this conference and I’m glad you got to come and if you didn’t get to come, I can’t wait to meet you sometime soon. All in all, the conference was awesome and a historical day.
Thanks for reading The Christianville Spirit. Thanks to the families and doctors who make the PLTS Union possible.
No comments:
Post a Comment