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Parent Heart Watch
Protecting Youth from Sudden Cardiac Arrest
The Pulse..... Let the beat go on!
Volume 2 Issue 4 October- December 2008
In This Issue
Highlights from 2008 AHA Scientific Sessions
Reminder - Annual Membership Campaign
Experienced Leaders - Diana & Rob Roy
Newer Member Spotlight - Rae Ann Norell
Upcoming National Conference
Research and Legislation
Donations
Quick Links
Greetings!
 
With the passing of another year and the beginning of a new one, we often find ourselves taking time to reflect.  We reflect about the past... "What could have been done differently?"  We reflect about the future... "What can we do better?"

So many valiant accomplishments were made by many of you last year, as well as in the past.  There are no efforts too small that do not warrant you being able to claim that you are making an impact.  With every phone call, every email, every meeting, every time you push through closed doors or face the pain you would rather not focus on, you garner strength and make a difference, demanding the voices be heard for those who can no longer speak. 
 
The collaboration of Parent Heart Watch members is a voice with a mission that many on Capitol Hill will soon come to know.  The 111th Congress will be transitioning into office, a new President will take office, and despite hard economic times, many say hope is present. 
I believe in the value of who we are, what we do, and the changes we are bringing about to save so many young lives.  Sudden death doesn't have to happen. Your involvement matters.

Thank you for being a part of Parent Heart Watch.  We are getting better and stronger.  I look forward to working together with you again this year, making our national voice heard loud and clear.
 
Linette Derminer, Executive Director
Highlights from 2008 American Heart Association (AHA) Scientific Sessions
 
The AHA Scientific Sessions took place November 8-12, 2008 in New Orleans, LA. There were 225 exhibitors and over 25,500 attendees from around the world; of these approximately 9,500 were physicians. There were hundreds of sessions.
 
2008AHASSessionsIn attendance from Parent Heart Watch were: Linette Derminer, Laura Friend, Martha Lopez-Anderson, Andy Anderson, Susan Fiorelli, AJ Barcia and Nancy Barcia.  While working at the PHW exhibitors booth, many discussions took place between PHW members and key stakeholders in the cardiac research and medical fields.
 
Some of the notable visitors included:
  • Mark Totman, President of BioTek Instruments, Inc., the creator of Pocket CPR. 
  • Brant Charters, Sales Representative of GeneDx, Inc. (specializes in genetic testing for rare hereditary disorders) informed PHW that the company will be coming out with CardiomeDx genetic testing for HCM.  The testing will have 12 more markers than previously used and it will cost almost half the price.
  • Jodi Lemacks, Esq. - Mended Little Hearts, Program Coordinator
  • Lisa Lanting - Exhibits Manager, Prevention Cardiovascular Nurses Association
  • Robyn Goddard - Exhibit Director, American College Cardiology
One exhibit that PHW members found very interesting was presented by Saroja Bharati, MD, Pathologist with The Heart Institute for Children (THIC).  Dr. Bharati's exhibit consisted of youth and adult hearts (mainly youth) ranging in ages from 5 to 65 years old, each with images on microscopic slides and an explanation of her findings.   Medical examiners who are unable to determine a cause of death can consult with Dr. Bharati to help identify the cause, however, the entire heart must be sent to her. She then studies the heart inside and out, and provides a written report of her findings.

Dr. Bharati would be happy to present to physicians, medical examiners, and other groups that may benefit from her expertise and findings.

A second very interesting exhibit was presented by the National Death Index (NDI).  This exhibit provided written materials (Application Form, User's Manual for Study/Project, User Fees, and Instructions for Completing Cause of Death Section of the Death Certificate) with information on the services they provide, some of which are available online through the NDI Retrieval Program and for public use.  To learn more about the NDI, use the following link; National Death Index
Reminder - Annual Membership Campaign
 
On November 3, a Membership Campaign packet, including Membership Agreement, Membership Benefits and Conflict of Interest Policy was sent to all existing PHW members for review. PHW asks that you visit www.parentheartwatch.org, or use the link below, then click on "Apply/Renew Now" to submit your 2009 Membership Application and dues ($49*) online.**
 
You may still apply for 2009 membership, however the deadline for having your child's photo included in the Kids' Photo Heart Tile, and you and your child's information included in the 2009 PHW Membership Directory, has passed.
 
 
* Financial hardship will be considered on a case by case basis. Please contact Parent Heart Watch at 817-788-2960.
** All major credit cards accepted.
Experienced Leaders - Diana & Bob Roy

    

Diana and Bob Roy are Parent Members.  Diana, Bob, and their oldest son Justin (a junior at Point Loma Nazarene University in San Diego) live in Temecula, California.  They have been members of PHW since Fall, 2007.DaveNorell
 
"On May 20, 2005, our youngest son Travis (pictured on the right) was three weeks away from 8th grade graduation when he collapsed at his middle school in Murrieta, California.  He had suffered a Sudden Cardiac Arrest caused by a previously undiagnosed heart condition called Hypertrophic Cardiomyopathy.  He was eventually transported to Children's Hospital in San Diego by helicopter.
 
Travis spent a total of four weeks in the Pediatric Intensive Care Unit at Children's Hospital.  An MRI was taken to ascertain the extent of the damage to his brain.  The MRI revealed massive brain cell death and damage.  Travis had gone 23 minutes without circulation after he collapsed.  He was blind, he was completely paralyzed, he could not speak and he could not chew or swallow.  Travis died a week later on June 25, 2005. He was 14 years old."
 
2005PresentationbyRRoyIn September, 2005, just two months after Travis died, Bob Roy approached the Murrieta Valley Unified School District and requested that they place Automated External Defibrillators (AEDs) at all of their schools.  In November, 2005, the School Board unanimously approved a resolution to implement an AED program district-wide.  Rachel Moyer (PHW member and past President of PHW), who also lost a son to Sudden Cardiac Arrest, flew out from Pennsylvania for the meeting and donated an AED to Thompson Middle School nurse, Barbara Schuman.  On May 20, 2005 when Travis collapsed at school, Barbara performed CPR on him for 15 minutes until she was relieved by paramedics.  After Rachel's presentation of the AED, the Roy family presented Barbara with a bouquet of flowers (pictured above).
 
Murrieta Valley Unified School District implemented a unique AED program in a 3-2-1 format. There are 3 AEDs at each high school, 2 at each middle school and one at each elementary school. At the urging of The Travis Fund, other neighboring school districts have also implemented AED programs using the 3-2-1 format.  This format places AEDs strategically on campuses so they are available for deployment within three minutes.
 
Since Travis' death in 2005, Diana and Bob have become active advocates both locally and statewide.  In 2006, following their efforts at Murrieta Valley School District, the Roy family created the Travis R. Roy Sudden Cardiac Arrest Fund [The Travis Fund], a 501 (c)(3) non-profit organization.  The motto of the organization is "Raising awareness so others may survive."

So far, The Travis Fund has been responsible for the placement of 105 AEDs in: 
    � Murrieta Unified School District
    � Temecula Unified School District
    � San Jacinto Unified School District
    � Point Loma Nazarene University
  
"Our goal is to see AEDs placed in every public school and facility in California." 

Bob and Diana successfully advocated for a California "Sudden Cardiac Arrest (SCA) Awareness Day."   Joint bill ACR-159 designated the day as September 12.
 
In addition to the above efforts, Bob and Diana have made numerous educational presentations.  Recently, Bob was designated a PHW State Coordinator. 
 
To learn more about the efforts of the Roy family and the Travis Fund, use the following link:  Travis Fund
Newer Member Spotlight - Rae Ann Norrell
 
Rae Ann Norrell is a Parent Member who lives in Meridian, Idaho with her family.  Rae Ann lost her son David in April 2004.  Rae Ann joined Parent Heart Watch in 2006.
 
2005PresentationbyRRoy"I received that horrible phone call informing me that my 24 year old son David, had died while he was competing in a triathlon.  He was on the second leg of the trip, a 12 mile bike ride up a mountain road, after having kayaked down the Boise River, when he collapsed.  No one was immediately there, and after 30 minutes of CPR while they awaited an ambulance, he was unable to be revived.
 
The autopsy revealed that he was born with a very rare condition called coronary artery atresia, which had gone unnoticed throughout his very active life.  Thus began my long journey of grief.  I was fortunate to find our local chapter of The Compassionate Friends (TCF), www.thecompassionatefriends.org, which helped me immensely through this painful new way of life.  After one year I became the Boise area chapter facilitator.  I have been to two national conferences, which are very healing.  Even if you haven't attended a TCF meeting, I highly recommend attending a 3 day national conference.  Our mission is to assist parents, as well as grandparents and siblings, toward the positive resolution of grief following the death of a child of any age.  We offer understanding and hope, and reach out to say, "We need not walk alone."  TCF has held me together, and there is so much comfort in meeting with other parents who are going through the same ordeal. 
 
Several months after David's death, I heard of PHW and posted David's story on the PHW website.  I so much appreciate the hard work PHW members do to get the word out about cardiac problems in children and young adults.  I haven't had time to be active in PHW, as I'm working full time as a clinical social worker, play violin in the Boise Philharmonic, facilitate TCF, and spend time with my daughter and 3 young grandchildren.  I have helped place a defibrillator in memory of David at his high school."
Upcoming National Conference
 
2009SunParent Heart Watch (PHW) will hold its fourth national conference on January 16th -19th at the Marriott Orlando Airport in Orlando, Florida.  This annual event will bring together over 100 new and old members and advocates from 25 states to discuss the latest trends, and preview the newest PHW initiatives and collaborative efforts in protecting youth from Sudden Cardiac Arrest (SCA).
The Conference will kick off with a Welcome Dinner on Friday evening and keynote address by Matthew Noble, author of "One Beat at a Time - Living with Sudden Cardiac Death" and five time sudden cardiac arrest survivor before the age of 18.
 
On Saturday and Sunday a distinguished group of physicians and speakers will lead presentations, workshops and panel discussions on topics including, but not limited to, hosting community heart screenings, genetics, health psychology, Public Access Defibrillation (PAD) Programs, AED legislation, national registry and AED survival trends, collaborations with other organizations and more.
Research and Legislation 
 
 
After recently learning of the sudden cardiac death of a San Francisco area high school athlete, Diane Claerbout, California Parent Heart Watch State Co-Coordinator of Stanford, CA, contacted the ABC affiliate in San Francisco, ABC 7.  Diane wanted the media to understand that this tragedy did not have to happen.  She explained that a heart screening and access to an AED may have saved the athlete's life. 
 
The news story also included information about a heart study of high school athletes in the San Francisco area, funded by a grant from the Professional Football Hall of Fame, that will begin in the fall of 2009.  To view the entire TV article, use the link above.
 
Mission Times Courier, San Diego, CA, Published 12/03/2008
 
San Diego City Council President Pro Tem Jim Madaffer announced that on December 2, 2008, the Council unanimously passed a first-in-the-nation bill declaring that automated external defibrillators (AEDs) are a requirement under the municipal building code.  To read the entire article, use the above link.
 
 
A national database allowing UKCPN pathologists to record information on sudden cardiac death cases referred to them was formally launched on November 10, 2008.  It will provide epidemiological data on the frequency of sudden cardiac death as well as important demographic information. The database will also provide information on geographic variation in the uptake of specialist cardiac pathology services. In the long-term, it is hoped that the database can be linked to other clinical databases to facilitate assessment of the families of young sudden death victims.  To read the entire article, use the link above.
 
December 30th, 2008 in Medicine & Health / Research
 
A new clinical trial suggests that long-term use of candesartan, a drug currently used to treat hypertension, may significantly reduce the symptoms of genetic heart disease. The related report by Penicka et al, "The effects of candesartan on left ventricular hypertrophy and function in non-obstructive hypertrophic cardiomyopathy: a pilot, randomized study," appears in the January issue of The Journal of Molecular Diagnostics.  To read more about the study, use the link above.
2009hearttilecYour Donations Make a Difference! 
In order to continue with aggressive efforts to educate about SCA in youth, to advocate for AEDs in schools, sporting events and practices and heart screenings for youth, PHW needs your financial support.  No dollar amount is too small!! Every dollar helps educate and advocate for change!  If you would like to make a donation to help, please send a check to Parent Heart Watch, PO Box 237, Geneva, OH 44041.  Also, you can now make a donation using your favorite credit card.  Please use this link PHW Website to go to the PHW web site and the "Make a Donation" page.
 
Thank you for making a difference.