6th International SADS Foundation Conference:

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6th International SADS

Foundation Conference:

Preventing Unexpected Sudden Death in the Young

Presented by the SADS Foundation Sponsored by

October 12-14, 2012, Salt Lake City, UT.

the Pediatric & Congenital Electrophysiology Society

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The conference will be held in the beautiful foothills of Salt Lake City’s Wasatch Mountains at the Marriott University Park Hotel, 480 Wakara Way, Salt Lake City, UT 84108. This newly refur-bished hotel is near the University of Utah, Red Butte Gardens, and the Hogle Zoo. The hotel is 30 minutes from Salt Lake International Airport. Guests can travel from the airport to the hotel by Express Shuttle for US $18 each way. Please call (800) 397-0773 for shuttle

reserva-tions. Complementary parking is available at the hotel, and a hotel shuttle is available for travel to downtown Salt Lake and attrac-tions near the hotel.

The room rate for this conference is US $89. To make a reservation, call Lynda at (801) 584-3888 or (800) 382-3320. Mention that you are attending the SADS confer-ence and make reservations prior to September 15th to receive this reduced rate at the hotel.

CONFERENCE LOCATION/

ACCOMMODATIONS

WHO SHOULD ATTEND

This conference is designed to discuss the complex problems associated with syncope and unexpected cardiac death in children and young adults. It will be particularly valuable to:

Discussion time to allow interaction with the faculty will be provided within the context of this conference.

All programs are intended to be accessible to all persons. If you have a disability and require assistance in order to fully participate in the con-ference activities, please call the concon-ference coordinator to discuss your specific needs.

• Discuss the complexities of and new developments in the diagnosis of inherited chan-nelopathies, including: Long QT Syndrome, Brugada Syndrome, Catecholaminergic Polymorphic Ventricular Tachycardia and Short QT Syndrome.

• Evaluate the importance of devel-oping and expanding a patient family pedigree in order to iden-tify and treat affected relatives.

• Discuss state of the art ion chan-nelopathy care—including new innovations and current best practices

• Explain living successfully and thriving with SADS conditions. • Analyze the genetics,

pathophysi-ology, symptoms, presentations, the diagnosis, and management of these conditions.

OBJECTIVES

At the conclusion of this symposium, the participants will be able to:

6th International SADS Foundation Conference:

Preventing Unexpected Sudden Death in the Young

October 12-14, 2012, Salt Lake City, UT.

The Sudden Arrhythmia Death Syndromes (SADS) Foundation is dedicated to saving the lives and supporting the families of children and young adults who are

genetically predisposed to sudden death due to heart rhythm abnormalities.

Continuing medical education credits are offered to health care professionals participating in Saturday and Sunday programs. • General Practitioners,

Pediatricians, Pediatric Cardiologists, Cardiologists, Nurses/Nurse Practitioners, Physician’s Assistants and Emergency Personnel • Families living with a

car-diac rhythm disorder (LQTS, Brugada, ARVD, HCM, etc.) • Families with a history of sudden

unexplained death of an

other-wise healthy child or young adult • Amateur sports representatives • Teachers & coaches • Anyone who has a

spe-cial interest in cardiac rhythm disorders and how these disorders predispose children and young adults to sudden cardiac death

Accreditation: This activity has been planned and implemented in accordance with the Essential Areas and policies of the Accreditation Council for Continuing Medical Education through the joint sponsorship of Primary Children’s Medical Center, the Department of Pediatrics at the University of Utah School of Medicine, Intermountain

AMA Credit: Primary Children’s Medical Center designates this live activity for a maximum of 9.75 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their par-ticipation in the activity.

Primary Children’s Medical Center is an approved

pro-FRIDAY’S ARE FOR FAMILIES

Arrive early enough for a group walk in Salt Lake’s foothills, a trip the Red Butte Gardens arboretum, or an outing to the brand new Natural

History Museum of Utah. Then join us between 3:00-5:00 for small group discussions about ICD’s, grief support, or parenting. At 5:00

pm meet other conference attendees and conference speakers in the Hotel Atrium to catch the shuttle over to Primary Children’s Medical Center for a tour and barbeque.

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Friday, OctOber 12, 2011

Thursday and/or early Friday: family activity(s) – go to zoo, etc. 1:00-3:00 Volunteer SADS Ambassador training

3:00-5:00 Breakout support sessions • ICD’s

• Grief

• Parenting Issues

5:00-8:00 Dinner at Primary Children’s Medical Center with Board & speakers

Saturday, OctOber 13, 2012

7:30 – 7:45 Registration and Continental Breakfast

7:45 –8:00 Welcome

8:00 – 8:45 Martin Tristani-Firouzi, MD

Cutting Edge Research and SADS conditions: The current state of Timothy Syndrome, Short QT, etc.

8:45 – 9:30 Michael J. Ackerman, MD, PhD

Latest Treatment Strategies for SADS Conditions

9:30 – 10:15 T. Jared Bunch, MD

Treating SADS Conditions in the Adult Population Life Markers and SADS: Men vs. Women, Aging, etc.

10:15 – 10:45 Break – view Exhibits, CPR training 10:45 – 11:30 Steven B. Bleyl, MD, PhD

Genetic Testing: Discovering the Secrets of Unexplained Death Through Genes

Genetic Counseling: The Role of Family and Detailed Family Pedigree

11:30 – 12:15 Mitchell Cohen, MD

Drugs and SADS Conditions: What Do I Use for Asthma, ADHD, etc.?

12:15 – 1:45 Lunch and Ask an Expert Panel – Moderator: Susan P. Etheridge, MD

SADS in 2020--Looking Toward the Future Interactive Question and Answer Panel with Experts

1:45 – 2:15 Break – view Exhibits, CPR training

2:15 - 3:00 Kathryn K. Collins, MD

ICDs: The Upside and the Downside

3:00 - 3:45 Michael J. Ackerman, MD, PhD

Exercise and Sports: Do I Need to Be a Couch Potato?

3:45 – 4:15 Bettina F. Cuneo, MD

Pregnancy, Pre-natal, Post-Partum Issues in SADS

4:15 – 4:30 Jason M. Garnreiter, MD

Wearing Two Hats—Doctor and Daddy

4:30 –4:45 SADSConnect: Our Kids Speak

4:45 –5:00 Healing Wall Ceremony and Candle Lighting View Exhibits, CPR

6:00 – 9:00 Gala 20th Anniversary and Volunteer Awards Dinner— hosted by G. Michael Vincent, MD, Founder of the SADS Foundation.

Sunday, OctOber 14, 2012

8:00 – 8:45 Breakfast

8:45 –9:00 Welcome

9:00 – 9:40 Peter Fishbach, MD

What needs to happen so all kids will be screened?

9:40 – 10:20 Robert Campbell, MD

The Role of the Medical Examiner in SADS Outreach and SCA Registry

10:30 – 11:15 Moderator: Susan P. Etheridge, MD

Parent to Parent to Kid Panel: School Issues

10:20 – 10:30 BREAK

11:15 – 11:30 Fundraising for SADS

SADS Volunteers with Laura Wall

11:30 – 11:45 SADS Ambassadors

11:45 – 12:00 Michael J. Ackerman, MD, PhD

Closing Remarks

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The 2012 International SADS Foundation Conference will give young people from around the globe a chance to make connections during SADSConnect. Friendships from the last conference will be rekindled

and new friendships will begin! SADS Connect, led by young people with SADS, will include discussions and informative sessions on the topics that interest kids. Join us for all three days, or just for Saturday and Sunday.

Friday, OctOber 12, 2012

All Day Family Activity During the Day – TBA

3:00-5:00pm Youth Meet and Greet- Genetic Counseling Students Reveal Poster Contest Winner

Saturday, OctOber 13, 2012

7:45-8:00am Welcome with regular Conference attendees, before breaking off to begin Youth Track

8:00-8:30 Introductions to people who did not meet on Friday 8:30-9:15 Tess Saarel, MD

How the Heart Works followed by Q and A

9:15-9:45 Lindsay Meyers, MSGC

Where did this come from? GC student activity

9:45-10:05 Break & Snack 10:05-10:45 Robert Campbell, MD

Athletics – knowing how much is too much & Q and A Session

10:45-11:15 Martin Tristani-Firouzi, MD

Your Beta Blocker

11:15-12:00 TBA

How to tell your friends, teachers, and bus drivers about your condition

12:15-12:45pm Lunch

12:45-1:30pm Young Adult Panel 1:30-2:30 Off Site activity 2:30- 4:05 Stacey Border

CPR/AED Instruction

4:05-4:30 Anne Maurer, MA, LPC

Prepare for speaking to conference “What I want to know about my condition

4:30-4:45 Speak to general conference 4:45-5:30 Healing wall ceremony

Sunday, OctOber 14, 2012

8:00 – 8:45am Breakfast

8:45 – 9:30 Mitchell Cohen, MD

What is my condition going to be like as I grow up?

9:30- 10:15 Susan P. Etheridge, MD and Michael J. Ackerman, MD, PhD

Break-out groups and discussions led by experts.

10:15-10:30 Break

10:30-11:45 Join main conference to hear school panel 11:45-12:00 Return for goodbyes, comments

SADSCONNECT (AGES 9 -18 YEARS OLD)

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Susan P. Etheridge, MD—chair

Professor of Pediatrics University of Utah

Assistant Director of Division of Pediatric Cardiology

Primary Children’s Medical Center Salt Lake City, UT

Jeffrey L. Anderson, MD, FACC, FAHA, MACP

Profession of Internal Medicine, University of Utah

Salt Lake City, UT

Alice Lara, RN

Sudden Arrhythmia Death Syndromes (SADS) Foundation

Salt Lake City, UT

Lindsay Meyers, GC

Primary Children’s Medical Center Salt Lake City, UT

Julie Fillmore, RN

Registered Nurse, Primary Children’s Medical Center

Salt Lake City, UT

Kismet Rasmusson, FNP-BC, FAHA, CHFN

Family Nurse Practitioner, Heart Failure Prevention and Treatment Program, Intermountain Medical Center Salt Lake City, Utah

Michael J. Ackerman, MD, PhD

Director, Long QT Syndrome/Inherited Arrhythmia

Clinic and Sudden Death Genomics Laboratory

Mayo Clinic

Assistant Professor of Medicine, Pediatrics and Molecular Pharmacology

Mayo Medical School Rochester, MN

Charles Berul, MD

Division Chief, Cardiology, Children’s National Medical Center

Professor of Pediatricss, George Washington University School of Medicine

Washington, DC

Steven B. Bleyl, MD, PhD

Pediatrician; Medical Geneticist University of Utah School of Medicine Salt Lake City, UT

T. Jared Bunch, MD

Electrophysiologist, Intermountain Heart Institute

Salt Lake City, UT

Robert Campbell, MD

Chief Medical Officer, Sibley Heart Center Children’s Healthcare of Atlanta Director, Sibley Heart Center Cardiology Associate Professor of Pediatrics Emory University School of Medicine Atlanta, GA

Mitchell Cohen, MD

Section Chief, Pediatric Cardiology Director, Pediatric Electrophysiology and Pacing

Phoenix Children’s Hospital Phoenix, AZ

Kathryn K. Collins, MD

Director, Arrhythmia Center, Children’s Hospital Colorado

Associate Professor of Medicine Denver, CO

Bettina F. Cuneo, MD

Director of Perinatal Cardiology The Heart Institute for Children Oak Lawn, IL

Susan P. Etheridge, MD

Professor of Pediatrics University of Utah

Assistant Director of Division of Pediatric Cardiology

Primary Children’s Medical Center Salt Lake City, UT

Peter Fischbach, MD

Pediatric Cardiology, Pediatrics Sibley Heart Center Children’s Healthcare of Atlanta Atlanta, GA

Jason M. Garnreiter, MD

Pediatric Cardiologist

Primary Children’s Medical Center Salt Lake City, UT

Alice Lara, RN

President & CEO

Sudden Arrhythmia Death Syndromes (SADS) Foundation

Salt Lake City, UT

Martin Tristani-Firouzi, MD

Associate Professor of Pediatrics University of Utah

Pediatric Cardiologist

Primary Children’s Medical Center Salt Lake City, UT

FACULTY

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