4th International SADS Foundation Conference
October 20 & 21, 2005, Chicago, IL
Join us in
Chicago 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. Agendas, registration, hotel information,
etc.
Quick Links...
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| Dear Sarah,
As you're taking your last summer vacation and getting
ready for the start of school and Fall activities, we at SADS
want to let you know about upcoming events and news.
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| SADS Awareness Month
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Help SADS prevent a child's death by making your
community aware of SADS. Our focus this year is, again,
the adults who work closely with children.
Contact the media and tell your story
Distribute materials to schools in your community
Give a personal GIFT
to help cover the costs of materials
Hold a special event to benefit the SADS Foundation
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| SADS Programming for Kids
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SADS Conference in
Chicago
LongQTeens, led by teenagers with
LQTS, this track will include relaxing discussions and
informative sessions on LQTS-related topics. Teens can
expect plenty of time between sessions for additional
activities or just hanging out. For a fun and memorable
experience with teens who have been affected by LQTS,
LongQTeens at the SADS Foundation Conference 2005 will
be the place to be!
Please let us know if
you (kids only) would like to LongQTeen e.mails from the
Teens who are planning the sessions.
SADSConnect is Online
This month we
launched SADSConnect, a Yahoo chat group
for young people with Long QT, cardiomyopathy,
arrhythmias, or other SADS conditions. We have gotten a
great response so far with more than 20 kids asking to
join—and some SADSConnect moms, too!
Click
here to join. SADSConnect
Don't
forget to fill out the registration form and parental
permission slip emailed to you after you join on
Yahoo.
If you want to be approved quickly, fill
out the registration form, have a parent call and give
us verbal permission for you to participate until the
signed form arrives, then mail your permission
slip.
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| SADS Advocates |
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Ad Hoc Coalition Saves Lives Through Public
Access to Defibrillation
Thanks to SADS help,
the Senate Appropriations Subcommittee on
Labor-HHS-Education restored funding for the Health
Resources and Services Administration’s Rural and
Community Access to Emergency Devices Program. This will
provide money for AEDs in local communities.
Coalition for Genetic Fairness Working For
You
In March, Congresswoman Judy Biggert
(R-Ill.) introduced a bill that would protect you and
your family from genetic discrimination in health
insurance and employment. However, despite President
Bush’s full support and unanimous approval in the
Senate, the Genetic Information Nondiscrimination Act of
2005 (H.R.1227) still awaits action in the House of
Representatives. We need your help!
This month, visit your representative at
his district office, and ask her/him to join 127 of his
colleagues by signing on to H.R.1227. Your personal
visit to a home office means that you don’t have to
worry about losing your health insurance or your job
because of a genetic test result.
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