Upcoming Events
Become part of the 16th annual "No Ball at All" campaign!
The 3rd Annual Run for Rosanna -Van Nuys, CA -July 24, 2010
5th Annual Ryan Weidler Golf Tournament -Norristown, PA -August 9, 2010
Bowl-A-Thon -Elmwood Park, NJ -August
14, 2010
Windy City Showdown-Chicago, IL -August 15, 2010
4th Annual Christie's Heartoberfest -Ballston Lake, NY -September 18, 2010
Layton Oktoberfest -Colorado Springs, CO -September 18, 2010
Sing it for SADS 2 -Dunmore, PA -September 25,
2010
To add to your special fund-raising event please contact Laura or call 800-786-7723
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Get ready for SADS Safe Schools.
Order your materials today!
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Greetings!
So many things are happening at the SADS Foundation! Don't miss a thing, and enjoy this month's e-newsletter. |
Climb to Conquer SADS: Best Year Yet!
Kathy Engh for the Allen Family | Thanks to all our wonderful families and their climbers, this year's Climb to Conquer
SADS event was a fantastic success! Our strong team of climbers ascended Mt. Rainier July 8-11 bringing with them family flags from around the world.
Chris Culbertson, Chris Anderson and Roland Lamarche. | Climbers and families raised funds ultimately making this the most financially successful Climb to Conquer SADS in history - nearing $40,000!! Wow!
Brian Hoots for the Kiss Family. | Laura was there to greet the climbers as they returned late Saturday night. It was a successful and safe climb complete with some fabulous photos taken by the climbers.
A special thanks to Anthony and Kathy Lucatuorto - National Climb Chairs, Brian Hoots - Climb Leader and Dr. Chris Anderson - Medical Advisor to the team.
To see the exciting photos and read more about the climb visit our website.
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Wall Street Journal "When A Heart Risk Runs in the Family"
 On July 13, 2010 the Wall Street Journal printed an article "When a Heart Risk Runs in the Family". The article discussed the issue of sudden cardiac death and addressed the need for more suitable screening and surveillance in the United States. Dr. Mike Ackermann, SADS Board President and CEO, was featured in the article.
What is most interesting about the article are the new statistics that Dr. Ackermann presents from his laboratory, The Mayo Clinic Windland Smith Rice Sudden Death Genomics Laboratory. The incidence of sudden cardiac arrest has remained the same, about 350,000 people die each year from SCA. What we now know is that of these deaths, approximately 3,000 of these are infants, and another 10,000 are children and young
adults between the ages of 1 and 40. Even further, genetic mutations affecting the heart's electrical system, account for about 25% of sudden
unexplained deaths in children and young adults and about 10% of infant
deaths. These statistics put a greater emphasis on the importance of genetic testing, especially in the event of an unexplained death, and early diagnosis for SADS conditions.
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July Quick Poll: PotassiumTake the July Quick Poll Now!  |
Found in orange
juice, avocados, milk, almonds, potatoes and, yes, bananas, potassium is an
essential mineral that is critical to heart function. Although it is possible to
get plenty of potassium from a healthy diet, most Americans do not get the
recommended amount of 4700 milligrams a day. We know that potassium is
especially critical for LQTS patients and many physicians prescribe potassium
for them. So do you take proscribed potassium or just try to eat high-potassium
foods? See a list of high-potassium foods here.
Take the July Quick Poll now to let us know how you get enough potassium.
Note: Do not take any over the counter/non-prescribed supplements without consulting your physician first.
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Advocacy News: FDA & Genetic Testing
On June 16, 2010 the FDA announced that it would seek public input to develop polices to regulate all laboratory developed tests (LTDs), vastly diminishing current "enforcement discretion" over LDTs.
It is clear that genetic testing oversight needs to be improved as current
regulations do not keep up with continually advancing technology and government
regulation is limited under existing regulations (CLIA). CLIA regulates only
performance standards and lab processes and excludes test quality. CLIA also
lacks mechanisms for review and approval of LDTs.  The FDA held public hearings on July 19 & 20 and plans to publish a series of Guidance Documents to establish new pre-market and post-market oversight over genetic tests.
The SADS Foundation and other like organizations agree that the best regulatory system should offer patients
timely access to new, clinically important tests, protect them from unsafe and
ineffective tests and keep healthcare costs low. Thus, SADS wrote a letter to the commissioner of the FDA, Dr. Margaret Hamburg, in support of this overhaul and stressing key items to be included in the new guidance documents. |
Pedigree Project Families win Goody Bags
1. Ahlea Martin Family -Rock Springs, WY
2. Lori Coward Family -Douglasville, GA
3. Trisha Taber Family -Scandinavia, WI
4. Christine Mark Family -Lawrenceville, GA
5. Barbara Copeland Family -Pasadena, MD
6. Darci Prins Family -Holland, MI
7. Eileen Gormley Family -Nashua, NH
8. Yasi Emamian Family -Pasadena, CA
9. Sandra Bufford Family -Hesperia, CA
10. Shawn Jordan Family -Joshua, TX
These ten families were the first after the May E-newsletter to register on the SADS Pedigree Project. Each family has won a special SADS goody bag for taking the initiative to register on the pedigree project. For more information about the pedigree project, click here. Keep your eyes out for the next chance to win a special SADS goody bag! |
Pre-Existing Condition Insurance Plan
Beginning July 1, 2010, patients affected by a SADS condition may be able to obtain health insurance under the new Pre-Existing Condition Insurance Plan(PCIP).
 PCIP offers coverage to uninsured Americans that have been
previously denied coverage because of a pre-existing condition and have
been
uninsured for at least six months. PCIP was created under the Affordable
Care
Act and serves as a temporary bridge program until 2014, when insurance
providers will be barred from denying coverage because of a pre-existing
condition.
In order to give states the flexibility to best meet their
needs, the Department of Health and Human Services provided states with
the
option of having the HHS run the program or running it themselves.
Twenty one
states have elected to have HHS administer the plans, while twenty nine
states
and the District of Columbia
have chosen to run their own programs.
Click here to see how your state has chosen to participate.
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Sincerely,
Alice, Laura, Joanne, Heidi and Adrienne
SADS Foundation
508 East South Temple, Suite 202
Salt Lake City, UT 84102
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