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SADS Literature Review--4th Quarter 2008 & ENewsletter
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Greetings!
As we enter the New Year, we give thanks for
our many supporters and volunteers for your
efforts this year and reflect on the many
successes we have had in 2008. We also are
taking the time to set goals and plans for
2009. We are excited about the objectives
that the Board has set for next year and
know that, with your help, we will be able to
save lives and help children and families
"live and thrive" with SADS conditions.
Please
help with a tax-deductible year-end gift!
We also have included some news in this email:
- SADS Seminars in New York City (Jan. 9 &
10). Featuring Dr. Silvia Priori--a
world-renowned researcher from Italy who is
now in New York doing research & seeing
families!
- Climb to Conquer SADS 2009
- SADS Pedigree Project
- NIH
- Needs Assessment--Let your voice be
heard!
So scroll down to get all the information and
have a wonderful New Year!
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Excerpts from the SADS Review of Literature
Risks with LQTS over Age 40
Do patients with long QT syndrome remain
at risk for sudden cardiac death after 40
years of age?
This study of the LQTS Registry patients
shows that diagnosis of LQTS, accurate
measurement of the QT interval, and
continuing assessment of any symptoms are
critical to prevent SCD in patients over 40
years old.
Postema PG, Wilde AA.
Nat Clin Pract Cardiovasc Med. 2008
Oct;5(10):602-3. Epub 2008 Jul 29.
PMID: 18665134 [PubMed - indexed for MEDLINE]
<<LQTS
over 40.pdf>>
Genetic Counseling for SADS Conditions
Uptake of genetic counselling and predictive
DNA testing in hypertrophic
cardiomyopathy.
Demonstrates the critical role of genetic
counselors in SADS conditions and the
prevention of sudden cardiac death.
Christiaans I, Birnie E, Bonsel GJ,
Wilde AA,
van Langen IM.
Eur J Hum Genet. 2008 Oct;16(10):1201-7. Epub
2008 May 14.
PMID: 18478037 [PubMed - indexed for MEDLINE]
<<Genetic
Counseling and HCM.pdf>
See the complete Lit Review
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SADS Seminars in New York City
Sudden Death in the Young: Is It Written
in the Genes?
An Informational Seminar for Families
January 10, 2009 from 9:30 am - 1:15
pm
Featuring Silvia G. Priori, MD, PhD,
Professor of Medicine & Director,
Cardiovascular Genetics Program
Leon H. Charney Division of Cardiology
Dr. Priori is a world renowned researcher in
SADS conditions and has just established a
research lab and a practice seeing SADS
families.
Cardiac Arrhythmias 2009: The Emerging Role
of Genetics
A CME-Sponsored Program for Cardiovascular
Specialists
January 9, 2008
Visit our website to learn more...
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Climb to Conquer SADS--July 10-12, 2009
Presented by PGx Health
We have had such a great time doing this
event the past two years. The area around Mt
Rainier is so gorgeous, and for the families
and friends that attended, the classes were
very informative and everyone had lots of fun.
This year we would like to expand CLIMB in
order to include all of you who were unable
to make it to Washington. We are asking you
and your family to sponsor a climber in 2009.
Each climber will receive your story and
pictures and will know that he/she is
climbing for your family.
The idea is for each family who sponsors a
climber to solicit donations from friends,
family, co-workers, local businesses-anyone,
to raise money for your climber. Climbers
will take a flag with your name with them on
the climb and will send you a photo and your
flag at the completion of the climb.
Please e-mail me if you are interested in
sponsoring a climber this year--and with any
other ideas you may have. Together we'll make
the 3rd Annual Climb to Conquer SADS the best
ever!
Suzie@StopSADS.org
or 1-800-STOP SAD.
See pictures of our 2nd Annual Climb to Conquer SADS
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Pedigree Project--Trace Your Family and Save Lives!
We've begun calling families to help them
fill out their family history and we'll soon
have forms online for you to submit before
talking with our staff.
This project will not only help your family
now but will be a very useful tool for
research in the future.
Contact Joanne (Joanne@sads.org
or 1-800-STOP SAD) if you would like to be
among the first to participate or if you have
any questions.
More information and tools to help you find family members at risk.
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New NIH Web Resource on Children's Medical Research
The NIH has created a new website for parents
thinking of enrolling their children in
medical research studies. The site uses
award-winning video featuring children,
parents, and healthcare providers discussing
the rewards and challenges of participating
in research.
www.ChildrenAndClinicalStudies.nhlbi.nih.gov
This new site can greatly benefit SADS
families who are thinking of participating in
research studies. We suggest that anyone
considering enrolling in research with their
children look at what the site has to offer you.
Visit the SADS Website to learn more
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Sincerely
Alice Lara
SADS Foundation
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