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Genetic Discrimination
Last Summer I wrote a little article about genetic discrimination and
the Congressional Bill that was just out of committee. The bill has now
passed the Senate. We are urging the House of Representatives to consider
and pass the Genetic Information Nondiscrimination Act now. Unless we
begin to address medical privacy issues, many of us may not be able to
obtain insurance in the future. Please write your Congress Person now
or look online for more information: http://www.geneticalliance.org/justsayno.html
Seminar to be held in SF, CA
(click photo for more details)
SADS and the Hypertrophic Cardiomyopathy Association
Presents a seminar for families impacted by heart rhythm disorders
Tuesday, May 18, 2004 6-8 p.m.
Marriott Hotel
(55 Fourth Street, Sierra Street A)
San Francisco
Presenters:
· G. Michael Vincent, M.D. Founder & President, SADS Foundation
·Michael J. Ackerman, M.D., Ph.D.
· George Van Hare, M.D,
·Paul J. Wang, M.D.
·Barry J. Maron, M.D.
Light refreshments will be served.
Please RSVP and contact for more information:
Kathryn Blum - Phone: 209.576.3880
Email: kathiblum@yahoo.com
or Gwen Davis (SADS Foundation)
Phone: 1.800.STOP SAD Email: gwen@sads.org
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SADS International Conference
In Salt Lake City
Fri. August 27th - Sat. August 28th
Salt Lake City Marriott City Center
The 3rd International SADS Foundation Conference will be an event that
you will not want to miss. As one participant put it last year, "the
conference…so greatly exceeded my expectations that it gives me goose
bumps." And for those of you who were with us in Atlanta, we have added
many new discussions, including new research, genetic testing, early
detection strategies, as well as an opportunity to get certified
in CPR with an AED (Friday morning), learn how to find your family
(Friday or Saturday) and programming for your kids (above age
10).
We will again have a reception on Friday evening and, this year, we
have a family trip to the 'red rock country' of Utah after the conference.
Join Dr. Vincent and the SADS staff and many volunteers for a relaxing
trip-make new friends and have a great time together!
Surrounded by the majestic beauty of the Wasatch Mountains, this year's
conference will be held at the Salt Lake City Marriott City Center.
It is located in the 'Heart' of the Salt Lake City within walking distance
to cultural events, dining and entertainment including the Temple Square
Genealogy Library.
More details about the conference at...
www.sads.org/conference04/program.htm
More details about geneology trip and Moab trip (click photos)
SADS website: www.sads.org
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Networking Program
After a temporary hiatus, the SADS Networking program
is up and running. Our objective is to simply provide contact information
and limited medical histories of people living with LQT who desire to
communicate with others in similar circumstances.
The program is not, however, a vehicle to obtain medical advice. Always
seek medical advice from qualified heath professionals.
The quick and easy protocol is:
1) Fill out a short online form at www.sads.org/networking.html
2) Checkmark the 'permission' box which allows SADS to share very
limited personal information such as first name, state of residence,
email address, medical diagnosis and treatment etc.
3) Access the password-protected portion of the website to contact
and communicate with other people in close proximity or similar circumstances.
(Respect for participants' privacy and
sensitivity is of the up most importance. Involvement in the Networking
program is strictly voluntary. You may have your information removed
from the site at any
time.)
SADS Warning Signs: Your child
should be seen by a doctor if she/he has:
· Family history of unexpected, unexplained sudden death in a young
person
· Fainting (syncope) or seizure during exercise, excitement or startle
· Consistent or unusual chest pain and/or shortness of breath during
exercise.
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