Happy Wednesday, everyone!!
So, today, I thought I would highlight some other blogs that you might be interested in...I've pulled together a list of personal blogs from families with chromosome 18 changes. They are simply fantastic. The photos are wonderful, and the writing is beautiful and honest. I highly recommend taking a few minutes to get to know them. I know I've enjoyed it!!
The list appears on the right side of this blog page...
Oh, and if you happen to have a blog and wouldn't mind being listed, please just leave a comment here, and I'll link it!
Wednesday, May 26, 2010
Wednesday, May 19, 2010
Clarification
When families first contact the Registry or the Clinical Research Center, they may be confused about the relationship between the two. I know that this topic is discussed in various places on the respective websites of the two organizations, and that it is also frequently discussed at the Annual Conference. Still, as I was writing yesterday's post, I realized that I was talking about both the Registry and the Research Center, almost interchangeably! So, I thought this might be another good opportunity to give the a basic run-down on the two organizations.
The Chromosome 18 Registry & Research Society
The Registry is the advocacy organization. It was started by families of people with chromosome 18 changes, and it continues to be run by these families. The Registry hosts the Annual Conference. The regional groups host family gatherings and events. The Registry also raises funds for research. Families hold individual fund-raisers, while the Registry office organizes events such as the Phantom Tea and the Golf Tournament. The Registry also runs the listservs for the various conditions involving chromosome 18.
The Chromosome 18 Clinical Research Center
The Research Center is the scientific organization. The people who work at the Research Center come from a variety of professions. We have nurses, physicians, psychologists, and lab technicians. The research team is dedicated to learning more about chromosome 18 changes. We want to learn about how these changes affect people's health and development. We also want to learn about the changes at the molecular level. Our ultimate goal is to learn about the relationship between the precise molecular change and the medical and developmental concerns in people who have these chromosome changes.
Now, although the Registry and the Research Center are two separate organizations, they are very interconnected. The funds that the Registry raises support the work at the Research Center. Many families that are part of the Registry also participate in the studies at the Research Center. Also, a few of us work with both organizations. For example, most know that Dr. Jannine Cody is the director of the Research Center, but also that she is the president of the Registry. As for me, I work mostly with the Research Center, but I also coordinate the Registry's Facebook page as well as this blog.
For families, I think the most important thing to understand about this arrangement is that membership in the Registry does not mean that a family is automatically enrolled at the Research Center, and vice versa. Of course, the degree to which each family participates in the two organizations is completely up to them!
Hopefully, this might help clear up any confusion that might be out there about the two organizations!
The Chromosome 18 Registry & Research Society
The Registry is the advocacy organization. It was started by families of people with chromosome 18 changes, and it continues to be run by these families. The Registry hosts the Annual Conference. The regional groups host family gatherings and events. The Registry also raises funds for research. Families hold individual fund-raisers, while the Registry office organizes events such as the Phantom Tea and the Golf Tournament. The Registry also runs the listservs for the various conditions involving chromosome 18.
The Chromosome 18 Clinical Research Center
The Research Center is the scientific organization. The people who work at the Research Center come from a variety of professions. We have nurses, physicians, psychologists, and lab technicians. The research team is dedicated to learning more about chromosome 18 changes. We want to learn about how these changes affect people's health and development. We also want to learn about the changes at the molecular level. Our ultimate goal is to learn about the relationship between the precise molecular change and the medical and developmental concerns in people who have these chromosome changes.
Now, although the Registry and the Research Center are two separate organizations, they are very interconnected. The funds that the Registry raises support the work at the Research Center. Many families that are part of the Registry also participate in the studies at the Research Center. Also, a few of us work with both organizations. For example, most know that Dr. Jannine Cody is the director of the Research Center, but also that she is the president of the Registry. As for me, I work mostly with the Research Center, but I also coordinate the Registry's Facebook page as well as this blog.
For families, I think the most important thing to understand about this arrangement is that membership in the Registry does not mean that a family is automatically enrolled at the Research Center, and vice versa. Of course, the degree to which each family participates in the two organizations is completely up to them!
Hopefully, this might help clear up any confusion that might be out there about the two organizations!
Tuesday, May 18, 2010
Busy, busy times!
I have to begin this blog post by apologizing for the lack in posting these past few weeks. It has been a busy time around the offices of the Registry as well as the Clinical Research Society. Here's a snapshot of some of the most recent things that have been keeping us occupied and out of trouble!
- We have completed the Research Center's annual newsletter! For those people enrolled in the research study, you should be seeing it in your mailbox in the near future.
- We just learned that our paper on autism and 18q- has been accepted for publication! This paper identifies several new candidate genes that may contribute to autism. We've gone through several rounds of revisions on this one, and we're excited to see it in print in the near future!
- Many of you may know Bridgette Soileau. She used to work as the patient coordinator before she became a Research Area Specialist - Associate. Her area of specialty: Neuropsychology! Well, this past week-end, Bridgette graduated with her MA in School Psychology from Trinity University! Here's a photo of the happy grad with two of her work colleagues, Patty and Mimi!
- I've been prepping to present our data on the clinical features of 18p- at the European Society of Human Genetics
- Dr. Cody just came from the Society for Pediatric Research meetings in Vancouver.
- It has also been a busy time for the Registry office! The annual Golf Tournament is coming up on May 22nd. Also, the preparations for the 2010 Annual Conference are underway!
And those are just the things that came to me from the top of my head! As always, we have been bringing people down to San Antonio; making calls to collect more data; running experiments; interpreting results; enrolling new families; writing abstracts and manuscripts; coming up with ideas for new research directions; and looking for funding. As the title of this post says, it has been busy within the walls of the Research Center as of late!
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