The Stanford HCM Center Patient Day June 25, 2009

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The Stanford HCM Center Patient Day is designed for patients and their families who are interested in learning about HCM and genetic cardiomyopathies. This is an action-packed, patient-centered experience. There will be opportunities to listen to nationally recognized speakers such as Dr. Barry Maron and Lisa Salberg and to hear patients just like you share their stories!

Please review the following content: The Agenda, the Free Clinic, Participate in Research

The Agenda

7:30 Registration and Light Breakfast
8:00 Euan Ashley MD, Heidi Salisbury RN, Lisa Salberg, HCMA Welcome
9:00 Carolyn Ho, MD/Patient Diagnostic tools explained
9:30 Perry Elliott, MD/PatientGenetics of HCM

9:30 Break and Refreshments: Bay Area ICD Users Group
10:00 Barry Maron, MD/Patient General approach to management in HCM
10:30 Paul Wang, MD/Paul Zei, MD/PatientICD, Afib management overview
11:00 Michael Fischbein, MD/Patient Surgical myectomy overview
11:30 David Lee, MD/Patient Alcohol ablation overview

12:00 Lunch: Center Roundtable Meet the team!
12:30 Sharlene Day,MD/Patient Medications and HCM
13:30 Esther Liu,RN/Heidi Salisbury,RN/Patient From pediatric to adult, activity guidelines
14:00 Kelly Ormond,GNC/ Aleks Pavlovic/Family Pedigrees and genetic testing

14:30 Break and Refreshments: Research Update - Poster Presentations
15:00 Nurses Panel How to execute your plan of care
15:30 Euan Ashley,MD What the future holds?
16:00 Lisa Salberg,HCMAHow to be a HCM patient advocate
16:30 Shuttle Service to the Stanford University Human Performance Lab

17:00 Live exercise test with a HCM patient, including real-time echo image of the heart and discussion.
17:30 Refreshments/Meet and Mingle Hosted by the HCMA

The Free Clinic

In an effort to reach out to individuals and family members that are unable to access a HCM Center of Excellence, we will be hosting a free clinic at the same time of the conference. Echocardiograms, ECG, genetic counseling and medical consult will be available. If you are interested in participating, please select yes under registration. If you are a suitable candidate for this service, you will be contacted with a clinic appointment and directions.

Participate in Research

In the spirit of our commitment to continually work to improve the quality of life and treatment of HCM, there will be opportunities to participate in research during the Patient Day. If you are interested in participating, please select yes under registration. You will be notified with a clinic appointment and directions.

Summary of Research Opportunities:

Quality of Life Survey: Answer questions designed to assess your perceived quality of life in the context of having HCM. This information is confidential and will be used to improved clinical interventions.
DNA Collection: Contribute a sample of your DNA by using a Q-Tip to swab the inside of your cheek. This information is confidential and will be used to better define the genetics of HCM.
Estimate your Cardiac Output: Using a simple non-invasive technique, your cardiac output will be estimated. This information is confidential and will be used to define trends within the HCM population.
ECG Collection:Have anECG and walk away with a pocket-sized laminated version for your wallet or purse. This information is confidential and will be used to define trends within the HCM population.
Loss of a Loved One: Answer questions designed to assess the experience of losing a loved one to HCM. This information is confidential and will be used to improve patient care.


Organized by Stanford HCM Center

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Ticket Info:  

• Patient Day, $76.88
• Optional Donation to HCM Research, Free

Official Website: http://stanfordhcmpatientday-upcoming.eventbrite.com