SADS 20th Anniversary Logo









  November 2013

Share Your Story This Thanksgiving

 

The Holiday Season is a time for your family to gather and share stories, gifts, and meals. This year we hope you take a few minutes during this special time to reach out to family members who might not know there is a potentially dangerous genetic condition in the family. If you have not told all the branches of your family tree, now is the time. Please contact them before a life is lost to these treatable conditions. If you need assistance talking to your family or determining who may be at risk, the SADS pedigree kit is a helpful tool. This informative kit will cover all the information and steps needed to make sure your entire family is safe. The pedigree kit can be found here. Please contact Rachel at rachel@sads.org with any questions. 

SIRCh Registry is Live!

 

The holidays are also a great time to talk to your family about participating in SIRCh- the SADS International Registry of Channelopathies. Your participation in SIRCh helps expand and speed up research on SADS Conditions and connects you with researchers and clinical trials. You can join SIRCh by visiting sads.patientcrossroads.org and filling out a brief survey about your personal and family history relating to SADS conditions. Once you are a member you can click on the link "Add a Family Member" in the My Profile section to register a new family member. Together your family can help power research on SADS conditions!

Find Out What You Missed at the SADS Foundation's International Conference 2013

This year we had a great turn out at our annual Conference. Here's a look at what you might have missed.

 

Continuing Medical Education Certification:

Attendees learned about the cause of sudden cardiac death in the young, genetic counseling and testing, as well as the role of first-responders. At the end of each session, there was a question and answer period.

 

 

 

Breakout Sessions:

ICD Information and Discussion

Newly Diagnosed Families

School Issues: IEPs and 504s

Insurance and GINA

Pregnancy and SADS

Grief

 

 

 


Kids and Teens Track:
 
"It was nice to see the kids hanging out with each other and getting along so well...if you just
 looked at them as an outsider you would have thought they knew each other for years."
 
 
 
"For the first time in five years, since my cardiac arrest and diagnosis of LQTS.... I finally feel like I belong and fit in."  
-Cameron K.

  

 

 

Healing Wall:

This year we were honored to present a healing wall decorated with beautiful quilted flowers that were personalized in memory or in honor of a loved one with a SADS condition. This beautiful memorial was on display during the conference for attendees to read each story about our families.

 

  

 

 

New Developments:  

  • The SADS Foundation launched the new SIRCh registry at the conference. 
  • There was a training period for new Ambassadors and information about how to get involved in your area. To learn more about becoming an Ambassador or to find out about Ambassadors in your area, click here. 
  • We also raised over $1400 in our quilt raffle! All proceeds go to helping the SADS Foundation save lives.

 

"Amazing conference with so much information."
-Ana C.

 

If you were unable to attend conference, but would like to learn more about the information above, be sure to check www.SADS.org within the next few months to purchase a copy of this year's Conference DVD.

Updates Made to QTdrugs List 

11/17/2013

 CredibleMeds

  Added to Drugs to Avoid:

  • Dabrafenib (Tafinlar�), a kinase inhibitor for melanoma - added to Possible Risk of TdP list

  • Dexmedetomidine (Precedex�, Dexdor�, Dexdomitor�) an iv sedative - added to Possible Risk of TdP list

  • Posaconazole (Noxafil�, Posanol�), an anti-fungal drug - added to Conditional Risk of TdP list

  • Hydrochlorothiazide (Hydrodiuril� and many others), a diuretic for edema - added to Conditional Risk of TdP list

  • Furosemide (Lasix� and many others), a diuretic for edema - added to Conditional Risk of TdP list

  • Indapamide (Lozol� and others), a diuretic for edema - moved from Possible Risk to Conditional Risk of TdP list

 

 

For patients with congenital long QT syndrome (CLQTS), we recommend that, unless no other option is feasible, drugs on any of the QTdrugs lists should be avoided.

 

AZCERT.org is now CredibleMedsTM

 

 

 

 

*Warning: we've recently become aware of an app for QT Drugs that is NOT current and so not useful for LQTS. You should be very careful when looking at lists of QT-prolonging drugs. We only use the Credible Meds list as it is the most accurate and up-to-date.

Your Personal Risk Profile: LQTS 

 

In the same way that a diabetic knows their blood glucose number, SADS individuals should know the key factors that form their personal "risk profile" for the different SADS conditions.

 

For Long QT Syndrome, for instance, those key factors are:

1. QTc number

2. Type of LQTS - through genetic testing. (LQTS 1, etc.)

3. Where your mutation is on the gene. (location, location, location)

4. Symptom history, with particular emphasis on the length of time since the last symptom.

5. Age

6. Gender

 

Knowing more about your personal risk profile--and your children's--can help you make informed decisions about treatment options (i.e. ICD) and exercise and activity choices. It is common to have individuals who are higher risk and lower risk in the same family.

 

This is especially important when considering the family screening process. Adults who are older may not have a great deal of risk. However, they can pass LQTS on to one of their children who may have a higher risk profile. If that should happen, it is important to have that child identified as early in their life as possible. This is best done by genetic testing for your family mutation. Help educate family members about the importance of genetic testing. If a family mutation is known, it could save the life of someone in a future generation.

 

For more information and a new paper on LQTS Genetype-Phenetype Corelation, click here.

James Webb CD Release Party to Benefit SADS

 

James Webb is a male country music artist who has a personal story to share as he begins his musical career and chooses the SADS Foundation as the non-profit organization he will support. 

 

James has a nine-year-old daughter, Lola, who has LQTS type I.  Lola has swum in their home pool since she was a toddler, but she was diagnosed after a near drowning this summer at a public pool. Thank God she not only survived, she recovered without any brain damage. She now has an ICD and is doing great.

 

Because of his daughter, part of the proceeds from this party and further CD's will be donated to the SADS Foundation to help us to continue to support families and save lives.

 

Please visit https://www.facebook.com/JamesRobertWebb to learn                                                    more about James and his music. 

The SADS Foundation Announces the NIH and CDC Launch of the Registry for Sudden Death in the Young

 

The National Institute of Health and the Centers for Disease Control and Prevention are collaborating to create the Sudden Death in the Young Registry - a registry of deaths in young people from conditions such as heart disease and epilepsy is being created to help researchers define the scope of the problem and set future research priorities.

 

"This registry will provide valuable information for physicians to use in order to conduct essential research for the treatment and cure of sudden unexpected death in young people." says Dr. Michael Ackerman, M.D., Ph.D., "We look forward to working with NIH and CDC as the database is established and becomes a significant tool for future care of our patients and their families."

 

"The sudden death of a child is tragic and the impact on families and society is incalculable," said Jonathan Kaltman, M.D., Chief of the Heart Development and Structural Diseases Branch within the Division of Cardiovascular Sciences at the NIH's National Heart, Lung, and Blood Institute (NHLBI) and speaker at our conference, "This registry will collect comprehensive, population-based information on sudden unexpected death in youths up to age 24 in the United States. It is a critical first step toward figuring out how to best prevent these tragedies."

 

The SADS Foundation is pleased with the development of this new registry and the connections to the experts working with the NIH team.

Goodbye Anne Maurer!

 

Anne Maurer

Dear SADS Family,

 

With a heavy heart I am leaving my position at the SADS Foundation this week. I have had such an amazing time getting to know some of the strongest families I have ever met. I learned so much about the heart, it's intricacies, it's vulnerabilities, and how much it can handle. The medical information I have learned probably equals another master's degree, and I know the affected families I worked with have had to learn a PhD's worth of information to keep their family safe and healthy. I will keep the relationships I formed close to my heart, and I am so grateful for being a part of so many lives.

 

I am sad to say goodbye to my SADS Foundation team, and the great doctors, researchers and medical professionals I have had the pleasure of working with. This is an incredibly dedicated bunch of humans, who have committed their lives to a great cause. Being a part of our seminars and conferences often overwhelmed me to witness the compassion and dedication of those in the professions able to help those who are affected (and the many who are in both the roles of the helper and the affected). I am proud to be able to have rubbed shoulders with you during my time here. I will do my part to continue to raise awareness of SADS conditions wherever I am in my life in the future.

 

In my future career I will continue to work with people who have challenges in their lives as a mental health therapist in private practice. I hope to carry forward all I have learned from everyone associated with SADS - and I know if I ever run into anyone who faints- I will be asking them a TON of questions, and I will know who to send them to!

 

Thank you so much for everything.

 

Sincerely, Anne 


 

November 23
NYU Family Seminar
New York, NY
Upcoming Events
    
 
November 30
Brittany's Trees
Carol Stream, IL

 

  




December 6
James Web CD 
Release Party
Tulsa, OK







Sincerely, 

The SADS Foundation

Alice, Anne, Carol, Sylvie, Christine, Jan, Rachel, Sarah, Grace, David and Brandon

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