SADS 20th Anniversary Logo

March / 2013
Greetings!

Conference Break Out Groups!

2013 Conference is taking shape, and we wanted togive you a sneak peek at the topics for our small afternoon sessions being held on November 1,2, and
 
 3rd in Columbus Ohio. This year we will be holding small discussion sessions with experts in the area of ICDs, Grief, Pregnancy. Insurance, School Issues and New Diagnoses. These small meetings are a great way to get all your questions answered, and to talk with other patients who are going through the same things as you and your family.
 




     
 
Laura's Farewell
 
Dear friends,
 
I just want you to know that I'll be leaving the SADS Foundation at the end of the week to pursue an exciting opportunity as Foundation Director for Valley Mental Health. I have loved getting to know you all over the years, and working together, feel that we have truly made a difference. The lessons I have learned from all of you will last my entire life, and I'm grateful for the experience. 

For SADS medical questions, call Alice, Anne or Rachel and for fundraising questions, contact Kate or Sarah at 1-800-STOP SAD or 801-531-0937. I encourage you to continue your support of the SADS Foundation, and know you're in my heart and thoughts.

Support Group in Southern California Huge Success! 


Report from Bridget McGaughey, group leader:

For our first "We Heave Heart" Support group, we had a successful
 turnout of 9 people! As my first event and party planning experience, I had so much fun getting together some ideas for our first support group, with a "Heart" theme, of course. We had great support from SADS with information that everyone loved!! We had a nice chance to eat some heart healthy foods (Bridget's discussion topic for the meeting) and each share our personal stories with how SADS has affected us individually and as families.

What I heard most from everyone is how needed these groups are! The ability to meet others in our same situation is invaluable. An attendee texted me Sunday to say, "Just wanted to tell you thank you again for hosting the support group. I have to be honest, it was a bit overwhelming but I am glad it opened my eyes to be more thorough when it comes to the care my children & I receive."

We are planning meetings going forward once per quarter, and hope to have more attendees each meeting!

If anyone in the SoCal area is interested in joining our next meeting, please contact me at cell: 858.682.7234 or email: lilmissbridget@gmail.com.

 
Tips for Wellness
  
Here are a few tips to keep in mind to stay healthy when you have LQTS and other similar SADS conditions. These tips are adapted from an article written by Katherine Timothy. 

 


1. Maintain strict compliance with prescribed Beta-blocker medications. 
2. Avoid all drugs or medications
 implicated to cause further prolongation of the QT interval.
3. Adhere to a healthy diet, and particularly increase the intake of potassium rich foods.
4. Get plenty of rest.
5. Remove all alarm clocks or telephones from resting areas. 
6. Reduce, as much as possible, stress and anxiety.
7. Seek help to relieve problems of depression, but be cautious in taking prescribed medications for depression.
8. Increase dietary intake of potassium rich foods.
9. Reduce consumption of sugary foods.
10. Precautionary avoidance of drinks and foods containing caffeine and/or alcohol are suggested (some clinical studies suggest a pro-arrhythmia effect with excessive ingestion of caffeine and alcohol).

 



Kate Throneburg
 
I am very excited to join the Development team at the SADS Foundation. I bring experience in management, event planning, soliciting donations, and writing. I graduated with degrees in Linguistics and History from the University of California, Santa Cruz, and spent many years living and working in and around the Bay Area. I'm thrilled to have the opportunity to work with such a compassionate and talented staff and in this nonprofit with a valuable life-saving mission.
 
Medtronic Seeking Long-Distance Runners Who Benefit from Medical Technology 
 
Applications for the eighth annual Medtronic Global Heroes program will be accepted through April 26, 2013. The program honors up to 25 runners from around the world who benefit from medical technology. In seven years, 159 runners representing 23 different countries have been honored.

Honorees receive two paid entries into the 2013 Medtronic Twin Cities Marathon or the Medtronic TC 10 Mile and a travel package that includes airfare, lodging and meal expenses for the Global Hero and one guest.

To apply or nominate someone to be a Global Hero, visit medtronic.com/globalheroes.
 

 

Do you have an ICD? Participate in this Study!

 
This study looks at the benefits of websites that provide quality of life enhancement material to people living with an ICD. ICD patients can participate from home by taking online surveys and exploring the websites.

LEARN MORE! 
 






A few SADS physician experts (and their spouses) enjoying themselves at the World Congress in Capetown, South Africa, from left to right: Dr. Phil Saul, Dr. Susan Etheridge, xx, Dr. Peter Schwartz and Lusiella (hosts), Dr. John Treidman, Dr. Michael Ackerman (back), Dr. Mitchell Cohen and his wife.


Heart of the Matter

Want a sneak peek at Dr. Ackerman's talk "Exercise and Sports:  Do I Need to be a Couch Potato?" Come subscribe to our YouTube channel and see it today!  
 
To order your complete DVD set of the presentations from the SADS Foundation's International Conference, visit us at:
 
 
Bike the Drive
 
On May 26th, SADS supporter Sharon Lentino will be participating in an exciting event called Bike the Drive. Bike the Drive is a 30 mile round-trip biking journey along the beautiful Lake Shore Drive. If you are a biking enthusiast around the Chicago area, please consider joining Sharon for an awesome ride to help raise funds and awareness for the SADS Foundation. You can also make a donation through Sharon's First Giving Page: https://www.firstgiving.com/fundraiser/sharon-lentino/sadsbikethedrive.

To join Sharon's team, contact her at lentino1129@comcast.net for a participation code.

Learn more about Bike the Drive at http://www.bikethedrive.org.
 
 
 
New Staff Members Join the SADS Foundation Family


Rachel Palmquist

I am very excited to join the SADS Foundation as
the Family Support Assistant and look forward to
 working with the SADS community. I am currently working towards my Masters in Genetic
 Counseling at the University of Utah and received my Bachelors in Molecular Biology from the University of Washington. I have a special interest in cardiac genetics and know that ther
e is so much I can learn from working with the SADS community. I am continuously impressed by the strength and resilience of families dealing with inherited disorders and I believe that every individual and family should have access to education and support. I am so happy to join a foundation that is devoted to this cause!



Upcoming Events
Devon's Beat 5 - K - April 6, 2013
In honor of Devon Parrott
Lincoln, MO 


 


School Nurse Conference - April 12, 2013
 

Sandusky, OH

School Nurse Conference - April 18 - 19, 2013
Ames, Iowa

Heart Rhythm Society Scientific Sessions - May 8 - 11, 2013 
Denver, CO

BA 5K in Honor of Brian Anderson - May 12, 2013 
Sewell, NJ

Bike the Drive - May 26, 2013
Chicago, IL
 

 

 


Sincerely, 
 
Alice, Laura, Sarah, Anne, Amy, Carol, Christine, Kate, Rachel, and Brandon.
The SADS Foundation