Dr. Luisa Mestroni , Director of the Cardiovascular Genetic Clinic and the Molecular Genetics Laboratory, opened up the meeting with a brief update on the global impact of genetics and how this rapidly expanding field is driving the future of science and technology. She spoke about her recent appointment with the United Nations and how her new responsibilities will overlap with her continuing research being done here at the University of Colorado .

Lisa Ku, genetic counselor and study coordinator, gave an update on the Study itself, reviewing the purpose of our research, and the basic premise of genetic analysis. She also presented a real-life story of one of our participating families to demonstrate how knowledge of inheritance and recurrence risk can directly impact early screening and intervention for individuals and their relatives.

Jennie Feiger , genetic counselor for the Adult Medical Genetics Clinic, talked about how to discuss genetics and family history with relatives, understanding that each individual may respond differently to the same information. She explained the importance of recognizing family dynamics and the roles of each person within the family unit. She also presented a variety of different approaches to communicating this information to individuals within the family.

Dr. Matthew Taylor , geneticist, co-investigator, and Director of the Adult Medical Genetics Clinic, gave an update on the progress of our current research. He again talked about one gene in particular, lamin A/C, which was discussed last year. However, this time he focused on some specific findings within our research population and how our data will lead to genetic testing that will be available for clinical use. He also talked about the future direction of our research, and how our study will be helpful for understanding the cardiomyopathy that runs in each family.

Finally, Mehul Lakhani , the project administrator, and Joe Kovarik , President of the Familial Cardiomyopathy Association (FCA), gave a brief demonstration of our patient website, and discussed the idea of a message board for participants to be able to post questions and share their experiences. Mr. Kovarik outlined the mission and objectives of the FDC, and an informal vote was taken on the best way to communicate information (most preferred a newsletter). A sign-up list was circulated and several of the attendees agreed to assist with the establishment of this organization.

Although the turnout was small, we had a very lively discussion about the importance of these topics and how to ‘spread the word’ throughout the community. One of the major issues discussed was the need to expand our audience for next year’s conference to include local cardiologists. Most of the participants agreed that they are still the ones educating their physicians about the heredity of cardiomyopathy, and felt that a conference like this one would help bring everyone together into a non-clinical setting. We hope to be able to make this change for the conference this year.