SADS Family Seminar
November 13, 2005 Dallas, TX
Change: Dr. Ackerman will replace Dr. Vincent in
Dallas
Join us in Dallas for the latest information from the
experts, the support and networking with other affected families and
the knowledge that you are doing everything you can to make sure
that you and your children lead long and healthy lives.
For more information or to register for
this free seminar.
Quick Links...
|
|
SADS staff have been busy the past two months with
conferences...conferences. In September, Alice attended the
symposium “Sudden Cardiac Death (SCD) in the Young:
Implications for Public Health, Research, and Clinical
Practice” organized by the Michigan Department of Community
Health. The outcomes of this 1-day conference included a plan
to determine the scope of SCD in young people Michigan and
specific plans for a community awareness program. A highlight
of the symposium was a presentation by the founders of the Kimberly
Anne Gillary Foundation on their program for pre-
participation screening for athletes and their program for
AEDs in schools .
Then, on to Ottawa to attend the SADS Canada family
seminar. The Children’s Hospital of Eastern Ontario provided a
wonderful facility and the families received lots of useful
information from the experts. Presentations included specific
disease discussions, genetics and genetic testing, emotional
support for the family and a program for placement of AEDs in
the Ottawa community.
In October, the “4th International SADS Conference:
Preventing Sudden Cardiac Death in the Young” was held in
Chicago. The two days were packed with medical information,
networking, sharing stories, and learning about genetics,
dealing with a SADS diagnosis and providing AEDs to schools.
The LongQTeens sessions were fantastic and plans are already
being made for ongoing chats and next year’s sessions. Watch
our website for photos!
SADS received a scholarship to attend the American Society
of Human Genetics (ASHG) scientific meetings held in Salt Lake
City. The scholarships were a collaborative effort between the
Genetic Alliance and the ASHG and we had the opportunity— not
only to attend any and all of the sessions—but to meet and
discuss issues with expert geneticists, scientists and genetic
counselors. On the front-page during the meetings, was the
early completion of the HAP map project--a breakthrough in the
genetics field. Watch for more information on genetics and
SADS conditions.
Finally, SADS is preparing to attend the American Heart Association
Scientific Sessions in Dallas this month. We will hold a
family seminar, attend various coalition meetings re: awareness
of sudden death in the young, meet with SADS Advisors and
attend some of the scientific sessions at AHA.
|
| New From MedicAlert |
|
From MedicAlert comes the E-HealthKEY, which lets
computer users securely tote around their complete
electronic health record. The device, which plugs into
any USB port on a personal computer and can be carried
on a key ring and can store everything from medical
records and health insurance information to X- ray and
ECG images.
"For many years we have recommended that people
enroll in some type of Medic Alert program and this is a
great advance in the usefulness of this data." --Dr.
Vincent
|
| ICD's: What Should Patients Expect?
|
|
Until recently, SADS has not focused
on ICD issues. But, with the increasing implantation
of our members and the recent difficulties with ICD
performance, we have begun to take part in the discussions
about the current state of the health systems regulating
pacemakers and ICDs. We will continue to expand our
role in covering ICD news and in advocating for ICD
patients.
Soon, I hope to be able to issue
some short, online surveys to get collect your ideas,
opinions, etc. In the meantime, if you have a device,
please fill
out this form or e.mail me and let me know:
- What type of device you-or your child/children
have
- Have any of them ever fired?
- Have you (or you child/children) had any problems?
|
| SADS Action Alerts |
|
ADAM Act to Establish a National Clearinghouse
for AED Programs for Schools Passes
Another
congratulations to people who contacted their
legislators--the ADAM Act Amendment passed the Senate!
Appropriations for the Act have been approved – the
budget is to be sent to the House/Senate conference
within the next few weeks for final approval. Again, we
have been cautioned that anything could happen here –
but it is a tremendous step in the right direction!
Coalition for Genetic Fairness Working For
You
This month congressional support for the
Genetic Information Nondiscrimination Act (H.R.1227) has
grown significantly. Today, H.R.1227 has 148 total
sponsors (90 Democrats, 57 Republicans, and 1
Independent), and momentum in the House is
growing.
To
keep this bill moving and to ensure that it gets passed
this year, we need your help.
Congress will soon decide the fate of the
Rural and Community AED Program. Adoption of the House
funding cut of nearly 80% for this life saving program
would virtually eliminate it.
Your member of
Congress can help prevent drastic cuts to a program that
provides your state, with automated external
defibrillators (AED’s) – lifesaving devices that can
shock a heart back to its normal rhythm. The Rural and
Community AED program provides local AED training and
access to this lifesaving technology. Placing AEDs in
more public settings could save thousands of lives each
year. Without these resources, many communities will
have limited or no access to AEDs and many lives will be
lost unnecessarily.
|
| |
