June 2015
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June 2015: In This Issue:
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SADS 8th Annual International Conference
The 8th Annual International SADS Foundation held on May 29-31 in New York is now behind us and is our best conference to date! All of us at the SADS Foundation and NYU Langone Medical Center would like to express our gratitude to each person who helped to make the conference successful and to everyone who came to share the weekend with us as we learned about the latest research and treatment of SADS conditions and supported one another.
First, acknowledgements are extended to the 10 generous Sponsors and/or Exhibitors as well as a very special individual donor listed below. Without their financial support this conference would not have been possible.
| Ambry Genetics |
Boston Scientific
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Gilead
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Medtronic
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St. Jude Medical
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Biosense Webster
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Gene DX
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Invitae
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OnebeatCPR
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Familion a subsidiary of Transgenomic
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Ricki Kane Larimer in memory of her loving husband, Robert Walker Larimer.
CME SESSIONS
Congratulations to Program Directors Glenn I. Fishman, MD, and Silvia G. Priori, MD, PhD, for jointly planning, organizing, and providing the scientific symposium Sudden Arrhythmic Death Syndromes: Recent Advances and their Role in Improving Outcomes with the SADS Foundation on May 29, 2015, at NYU Langone Medical Center. The day included 15 leading experts in their fields covering the latest research and knowledge about Long QT Syndrome, CPVT, Brugada Syndrome, and ARVC. The Smilow Seminar Room was packed with more than 125 attendees who were highly engaged and stayed to the very end to discuss the 16 separate presentations.
FAMILY SESSIONS
Bravo to the committee members for the 8th Annual International SADS Foundation Conference for planning and hosting the Family Sessions. The conference provided op
 portunities for education about the newest research and treatment of SADS conditions, an exchange of ideas between experts and families, and first-time entertainment by a comedy improv group for both adults and kids to jumpstart the networking night out.
The conference boasted an attendance of 52 families with a national presence of 19 states and an international presence from four countries: Chile, Germany, Ireland, and Spain. Our families made several long-term connections and are strategizing ways they can support one another regionally. Many of the attendees also posted items
 on Facebook from the conference to share with their support groups generating further discussion beyond the conference.
KIDS SESSIONS
A special track was created for the kids and teens where they joined in activities geared for them including decorating their own T-shirts, creating their own healing wall submission, question and answer sessions with health care professionals featuring Board President Dr. Michael J. Ackerman, group discussions, and AED/CPR training. Both parents and kids agreed it was a terrific opportunity for kids to meet other kids who are impacted with SADS conditions.
All of us at the SADS Foundation are privileged to work with and for our families and everyone in the surrounding circle who cares for them. We are honored to have spent time with you during our 8th Annual International SADS Foundation Conference. Thanks to everyone who is part of the SADS family for allowing the SADS Foundation to serve you!!
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CPR Legislation Across the United States
The good news? CPR is required of all high school graduates in almost half of the United States.
The bad news? CPR is not yet currently required in the other half of all high school graduates.**
Oregon is one of the most recent states requiring such life-saving training, and with a wide variety of training options to choose from (e.g., web-based versus in the classroom, certification versus general training and awareness, etc.) your home state might be a whole lot closer to requiring CPR training in order to graduate from high school. If you're curious as to whether your home state is one of those that requires CPR training (and how to get involved in those who do not yet require it), please click
HERE.
** = the number of states requiring CPR training is listed by program partners as anywhere from 21-24 states total; Oregon just passed their law this June.
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Most Recent Changes to Drugs to Avoid Listing
Based on an analysis of emerging evidence, the following changes have been made by the webmasters of the Drugs To Avoid Lists:
- These drugs have been removed from the list of drugs with Possible Risk of TdP for patients with Long QT Syndrome and the CredibleMeds website (but will continue to be monitored closely):
- These drugs have been added to the list of drugs with Possible Risk of TdP for patients with Long QT Syndrome:
- Leuprolide
- Degarelix
- Panobinostat
- Tropisetron
- These drugs have been moved from the Conditional Risk of TdP to the Possible Risk of TdP list:
- Clomipramine
- Desipramine
- Imipramine
- Nortriptylin
- Trimipramine
All of the aforementioned medications are also on the Drugs to Avoid List for patients with congenital Long QT Syndrome. For more information on the reasoning and rationale for the changes, please click
HERE.
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Another Great HRS Scientific Sessions Meeting!
This past May was a very busy one for us here at the SADS Foundation. Not only did we host our annual international conference, but the entire staff traveled to Boston, Massachusetts for the Heart Rhythm Society's Scientific Sessions. And this year was jam packed with activities!
Staff attended the Pediatric and Congenital Electrophysiology Society's pre-conference, where we awarded our annual
Young Investigator Awards to:
- Helene M. Altmann (working with Dr. Michael Ackerman) in Basic Science
- Thomas Roston (working with Dr. Shubayan Sanatani) in Translational Science.
The Foundation also hosted lunches with both Allied Health Professionals and Genetic Counselors, with record attendance. Dr. Ackerman also formerly launched our Speakers Bureau program for health professionals with a formal training of interested attendees. And we also hosted a scientific session on SADS conditions, with over 110 people in attendance learning about the complexities of treating SADS families. We look forward to the 2016 program, to be held in San Francisco next May, for an even bigger and better SADS presence!
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SADS Researcher receives three-year grant totaling $2.6M
Dr. Silvia Priori, a long-time SADS researcher and supporter, was awarded a three-year, €2.3M ($2.6M) grant, from the European Research Council to study targeted genetic therapies of CPVT and Long QT Syndrome, subtype 8. Professor Priori and her team will investigate strategies of gene-delivery, gene-silencing and gene-editing, comparing the efficacy of different methods that could potentially prevent sudden cardiac death in young people. We applaud Dr. Priori and look forward to reporting back to our SADS families about this exciting new research project. More information (which requires translation from Italian) can be found
HERE.
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First Two HSSA Schools in Utah
The SADS Foundation congratulates the first two schools in Utah to earn
Heart Safe School Accreditation (HSSA) awards. Led by Salt Lake City School District nurses Judi Yaworsky and Wade Capps, both
Nibley Park K-8 School and
Emerson Elementary School were presented with HSSA plaques and banners at an Awards Ceremony on May 5th at Nibley Park K-8 School.
 In attendance were President & CEO Alice Lara of the SADS Foundation and Dr. Tess Saarel from Primary Children's Medical Center to congratulate each school personally for bringing the importance of emergency preparedness for sudden cardiac arrests to the community.
Ms. Frances Battle, principal of Nibley Park K-8 School received the award from Judi Yaworksy who had worked closely with the school during the past year to meet each of the seven required elements to be accredited HSSA. "That we are one of the first schools to be a Heart Safe School in Utah speaks to how important we think it is to teach our students to be lifetime citizen first responders." says Ms. Battle, "Not only will those who enter our school be safer, but so will our future generations as AED/CPR training continues."
Wade Capps presented the HSSA Award to Ms. April Reynolds of Emerson Elementary School with whom he worked for the past several months to meet the criteria to become an accredited Heart Safe School. "Earning the heart-safe school accreditation has taken months of hard work and all of us at Emerson are very proud of this recognition." says Ms. Reynolds, "Being certified is another way we can continue to provide a safe and healthy environment our kids, staff, and entire community."
The SADS Foundation looks forward to many more schools in Utah becoming
Heart Safe School Accredited. If you want to find out how schools in your state can earn this crucial award, please visit
www.StopSADS.org/HSSA or call
801-531-0937 for more information. Keep our kids and families safe at school.
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Kristen Kraunelis 26 Years and Counting...
April 28th of 1989 was the day of my high school prom. I was a very healthy kid, on the track team and rarely missed a day of school. That morning, when the bell sounded to signal the end of "homeroom", I excitedly got up from my desk intending to meet my prom date and discuss all the details. However, as I entered the hallway, I collapsed unconscio
 us onto the floor. When I woke up several minutes later, the school nurse was standing over me and the ambulance was on its way.
Apparently, I had experienced what seemed to be a grand mal seizure. At the local ER, I had multiple tests done (none of which were on my heart) and was discharged a few hours later with a diagnosis of epilepsy. I was so happy that I would be able to go to the prom that
I didn't really
even consider what it meant to have epilepsy!
I attended the prom, (still feeling a little off), and was told by my parents that I had to come home directly afterward. Thank God I did because I experienced several more episodes of unconsciousness and took yet another ambulance ride back to the hospital (with hysterical parents in tow). Finally, I was hooked up to an EKG and continued to go in and out of consciousness. Only then did the doctors observe that I was having episodes of v-tach and later v-fib necessitating defibrillation and a temporary pacemaker.
Fortunately, the cardiologist who was caring for me had recently done some training on LQTS and was able to make that diagnosis. I had to be transferred to a university hospital as my condition was critical and unstable, but they were able to stabilize me with beta blockers and gave me EP studies to confirm the diagnosis. Later I had an ICD implanted and a genetic test completed to confirm which type of LQTS I have. With that I moved forward going off to college and grad school, finding a job that I love, and living a very happy and fulfilling life. I consider myself extremely blessed.
Early on, I was given a brochure for the SADS Foundation by one of my providers. I have since relied on the SADS Foundation for research updates, support, drugs to avoid, and lots more. I am so grateful to have had the SADS Foundation with me for a good portion of my journey through LQTS. Even after 26 years of living with LQTS, it is still comforting to know that the SADS Foundation is there continuing the mission of saving lives by providing education and support to the community.
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Defending Potential Changes to GINA
As you know, the SADS Foundation has always been a strong advocate for our patient families, especially in the areas of non-discrimination based on one's genetics. As a result of a recent Equal Employment Opportunity Commission Proposed Rule Change, we recently signed onto a letter (along with a host of other advocacy groups) voicing our grave concern that the proposed rule change would erode long-standing and important protections afforded to employees under the Americans with Disabilities Act (ADA).
Specifically, it could pave the way for weakening the Genetic Information Nondiscrimination Act (GINA) by allowing employers to inquire about employees' private genetic information or medical information unrelated to their ability to do their jobs and penalize employees who choose to keep that information private. We urged the Commission to withdraw this rule and maintain strong civil rights protections for all Americans.
We will be watching this proposed rule change and will keep you posted as additional advocacy alerts about this potential change (and others that might impact you and your families) come about. For more information on the proposed rule change, click
HERE.
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2015 Volunteer of the Year Awards
The SADS Foundation recognized the following individuals as the 2015 Volunteers of the Year at the 8th Annual International SADS Foundation Conference. Please join us in congratulating this year's awardees.
Knowles Family (Mark, Rebecca, Cameron, and Zach) who have been extremely busy volunteers ensuring that individuals and families know about arrhythmias and what to do in the event of a sudden cardiac arrest. Cameron, who is currently an eighth grader at Greece Odyssey Academy in New York, survived a pediatric sudden cardiac arrest thanks to his parents (Rebecca and Mark) who administered CPR until medical help arrived. Six years later, Cameron and his parents continue to increase awareness and educate their community on how to respond to a sudden cardiac arrest, helping to save young lives.
The Knowles family has been working to make Odyssey Academy Heart Safe through the SADS Foundation's Heart Safe School Accreditation Program. This past September, more than 1,000 staff and students received Hands-Only CPR training ensuring Odyssey Academy earned accreditation as a Heart Safe School. Now it's more than 6,000 staff and students! We are truly grateful for the efforts of Mark, Rebecca, Cameron, and Zach to ensure that both kids and adults are prepared to respond to someone in sudden cardiac arrest!
 Nancy Walker, Director of StorSimple, Central, at Microsoft in the Greater Chicago Area nominated the SADS Foundation to be the recipient charity at the yearly kick-off event of the Microsoft Incubation Team in honor of her daughter Cecilia who is living and thriving with a SADS condition.
Each year, the Team holds a dinner and event to raise funds for the selected charity. A Lip Sync Contest was chosen for 2014's event with teams from the different departments performing a lip sync to a favorite song in order to win the night's competition. Votes were made through donations to the SADS Foundation and the lip syncs were extremely entertaining due to the creative people at Microsoft. The total of pledges from employees for the Lip Sync Contest and the company match from Microsoft raised more than $22,000 for the SADS Foundation!
Finance Committee Members Anthony Lucatuorto and Joanna Bewick for their years of outstanding leadership in bringing awareness of SADS conditions to the general public and health services, in raising funds for our organization and its mission, and for using their professional skills to oversee the financial health of the SADS Foundation. Individually, and as a team, we could not have asked for two better volunteers to be on our board. The hours they give working with the board and staff members is truly valuable to the success of the SADS Foundation.
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EVENTS
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Style With Heart
June 19, 2015
Charlotte, NC
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Oktoberfest
September 19, 2015
Colorado Springs, CO
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