I attended the conference in Indianapolis this past week. The program was packed from 8am until 5 and then you had an opportunity to mingle with the researchers and doctors working on the genetics of these diseases. Wow, I now realize how little I really know.
So few people know anything about frontotemporal dementia and it remains a mystery to most. It often strikes people in the prime of their life as it did my brother and sister. Families suffer along with the patients due to the lack of diagnosis.
You will be hearing more about FUS a new gene identified in 2009. I first heard about this gene from Dr. Paul Schulz, at the Colorado premier of "Planning For Hope".
Dr. Bernardino Ghetti, President of the FTD 2010 Conference put together an amazing program. There were 22 countries represented at the conference. The next conference will be in 2012 in England.
If you have a family member and are interested in participating in a clinical trial...go to http://www.clinicaltrial.gov/ ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.
I will post more about the genetics later, I am trying to net them out.....and that is really tough.
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