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SADS in San Francisco
What a super conference--and great contacts
SADS made!
May 18th we held a family seminar in San Francisco in conjunction with
the Heart Rhythm Society's (HRS) Annual Conference. We had a panel of
physicians--both local and from across the country--and a roomful of family
members (including some kids). For the first time, we partnered with
the Hypertrophic Cardiomyopathy Association (HCMA) to hold this meeting.
What a great turnout! We had about 50 people plus the staff of the SADS
Foundation, the HCMA & the panel. Questions were asked about both the
Long QT Syndrome and Hypertrophic Cardiomyopathy--about diagnosis, treatment,
genetic testing, lifestyle changes, etc. A big thanks goes to our volunteer
coordinator, Kathy Blum and to our physician panel: Dr. G. Michael Vincent,
Dr. Michael Ackerman, Dr. Barry Maron, and Dr. George Van Hare.
As a participant said,
"It really does help to hear that other people have the same questions
and fears that you do. We all have to learn to make decisions when it
comes to what our kids can do. I came away from that night with a feeling
that I need to let go of the fear I have for my son. I don't want to transfer
that to him. I want him to live a happy and full life and be able to try
new things without worrying about it."-Susan Guzzetta, Mom
For the rest of the week, the SADS staff and many local volunteers staffed
our booth at HRS. Again, we worked with HCMA and had a fantastic joint
booth with over 200 people "scanned" who wanted more information and many
more who took our packet (& the HCMA packet) and went online to request
information. It was well worth the time and money to educate so many physicians
and meet with SADS Advisors and industry representatives! Thanks to our
booth volunteers: Debbie & Rob Purvis and their son Matt
Some learnings/happenings from the conference:
· Genetic testing now available from Genaissance · Acquired (drug-induced)
LQTS study--Dr. Dan Roden
· Green tea flavonoids-may help prevent events relating to the HERG Channel
· Pediatric Electrophysiology Society Annual Meeting next year at HRS
Conference
· Wilson Greatbach (makes ICD batteries, etc.) working on a new technology
to protect from cell phones; see Medtronic & Guidant links below for ICD
precautions:
(click for links)
Guidant
Medtronic
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SADS International
Conference
In
Salt Lake City
Fri. August 27th - Sat. August 28th
Salt Lake City Marriott City Center
At the SADS Conference, we will discuss
and answer questions about new research, genetic testing, ethics, early
detection strategies, as well as taking charge of your own health. An
experienced and qualified faculty will be available for question and
answer.
For reservations call the Marriott
City Center Hotel
(ph. 801-961-8700) - to get our amazing discount rate, be sure to mention
the SADS Conference.
New This Year...
Pre-Conference
AED and CPR discussion as well as an opportunity for certification.
Space for certification is limited - sign up early.
Family History Library research opportunities Create a family
medical tree in the world's largest storehouse of genealogical records.
Please contact us for your packet of information. Kids Track Friday
Kamp Kostopulos - Summer camp adventure is filling up so register
early
Post-Conference
Arches National Park and Colorado River Trip will be an adventure
you will tell your grandchildren about - there are limited reservations
available - sign up now. For more information visit our web-site at
www.sads.org or call
1-800-STOP SAD (786-7723).
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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Thanks For Your Support!
On May 11, 2004 in the House of Representatives, Congresswoman
Carolyn McCarthy (NY-4th) Introduced Bill H. R. 4335 - 'Teague Ryan Sudden
Child Cardiac Arrhythmia Syndromes Screening and Education Act of 2004'.
It is named after Teague Ryan, the 5-year-old son of Hofstra wrestling
coach Tom Ryan, who died in his father's arms on Feb. 16.
We sent you an email request to meet with or contact your
Representatives to tell them about LQT and how it affects your family-your
response was overwhelming. Thanks for responding---and thanks for letting
us know who you contacted. Hundreds of contacts have been made!
You can continue to make contacts with locate your local
Representative:
http://www.house.gov/writerep/
The Committee on Energy and Commerce Subcommittee on Health:
http://energycommerce.house.gov
If you have any questions or would like additional information,
please contact Gwen at gwen@sads.org
or phone 800.786.7723. We appreciate and thank you for your continual
support.
Networking Program
Your response to our new networking program has been
exciting. People across the country are finally connecting and chatting.
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.
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