Sudden Arrhythmia Death Syndromes Foundation
SADS Literature Review--4th Quarter 2008 & ENewsletter

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!

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

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...

Climb Banner
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! or 1-800-STOP SAD.

See pictures of our 2nd Annual Climb to Conquer SADS

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 ( 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.

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. 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


Alice Lara
Alice Lara
SADS Foundation