November 12

#CareHopeDiscover

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It's My Heart New England, Adults Living with CHD of MA, CMM, and Adult Congenital Heart Association Present:

 
 

Great Agenda

8:00-9:00a - Registration

9:00-11:45a - Welcome and Educational sessions

12:00-1:00p - Networking Lunch

1:00-5:30p - Educational sessions and Adult CHD Panel

6:00p - Optional Networking Dinner

 
 

Great Venue

Hilton Garden Inn

Waltham, MA.

 

Educational Content

Dr. Ram Emani, Dr. Ed Walsh, Dr. Rahul Rathod, Dr. Janice Ware, Samantha Butler, PhD, Dr. Sean Hagenbuch

Paul Thayer, Anna Jaworski

 

Adult Panel

Diane Pucci, Kim Edgren, James McNulty, Brian Lenihan, Annie Ritchings, Jon Ritchings

 

 

 

Great Schedule with Talented Speakers

Click each day to view the schedule.

Where CHD Cardiac Surgery Headed and what are the Challenges? Partnership-Driven Medical Care; Why is my Cardiologist torturing me?

Opening remarks, followed by a discussion by Dr. Ram Emani and Dr. Rahul Rathod.

Join Dr. Emani as he opens the conference discussing the directions that cardiac surgery is heading and some of the challenges that the industry faces moving forward.  Major topics will include complex congenital heart disease, valve repair, adult congenital heart disease, and the challenges of addressing complexity in the current healthcare environment. Dr. Emani will address the parent-caregiver interface, emphasizing partnerships that will help advance the CHD community. Specifically discussing how parents, adult patients and community members can impact care of future CHD patients by partnering with healthcare institutions.

Dr Rathod will wrap up our opening session as answers the questions you always wonder about: "Why is my cardiologist torturing me with all these tests?   What information is he/she getting out of it?  Is it worth it?  Is it safe?  How does it affect my care?" The discussion will review several of the commonly used testing modalities in cardiology, talk about what it's used for and why cardiologists do it.   Discussed modalities will include: echocardiography, cardiac magnetic resonance imaging, CT imaging, exercise stress tests, lung perfusion scans, chest x-rays, and cardiac catheterizations.

 

Session 1A: Diet, Nutrition, and Exercise

As diet and exercise is a controversial subject and even more so in patients with congenital heart disease.  This session will review a variety of pertinent literature and include both what we know and don’t know up to this point. Dr. Hagenbuch will talk about current testing that may be employed by your Cardiologists, as well as what benefit the information obtained may have. Dr. Hagenbuch will then review current expert opinion in the area and speak to what he typically tells his patients when asked about this area.

Session 1B: How Crafting our Stories Can Empower Us

Come on a journey with author, radio talkshow host, and heart mom Anna Jaworski as she unveils how crafting our own heart stories can empower us and make us better advocates for ourselves and the CHD community. In Part 1 of Anna’s speech she will tell us her story and how and why she needed to tell her heart story to others. Part 2 of the speech will reveal where members of the audience can use their stories to have an impact on the CHD community and beyond. The third part of the speech will be a mini-workshop for audience members to work on crafting their own stories and Anna will show how and why sometimes less is more. The final segment of the presentation will be a chance for questions and answers, and more importantly, sharing! Members of the audience will be given 1-2 minutes to share their own “elevator speech” so they can get feedback on how to improve their story

Session 2A: Developmental and Neurological findings in children with CHD

Congenital heart disease (CHD) is the most common cause of infant mortality from birth defects, affecting approximately 40,000 babies born each year in the United States. In their first twelve months, one in four infants with CHD will need medical therapeutic, palliative, or reparative heart surgery. Although mortality rates for children with CHD have significantly declined, the associated neurodevelopmental disabilities require further attention in this increasing population of survivors. Infants with CHD are at high risk for cognitive, language, and motor delays, along with regulation difficulties related to state management, feeding, and sleeping. Children with CHD have been associated with higher risk for long-term cognitive, motor, language, and emotional/behavioral problems, social difficulties, and inattention. From this growing population, research has generally focused on outcomes, with only a limited, more recent focus on prevention and intervention. Given the known long-term challenges for children with CHD, the American Heart Association recommends surveillance, screening, evaluation, and reevaluation of neurodevelopment in the pediatric CHD population. At Boston Children’s Hospital, the Cardiac Neurodevelopmental Program provides developmental assessment, screening and parent guidance from the newborn period, while still inpatient, until into young adulthood. Developmental supports for children and parents prenatally, during the hospital stay and post discharge will be discussed. The developmental profile of the infant with CHD post cardiac surgery will be reviewed. Developmental concerns, treatment options, and prevention methods for children and young adults with CHD will be discussed.

Join Dr. Janice Ware and Samantha Butler, PhD as they explore the positive and concerning findings surrounding development and neurology in children with CHD from infant to teenager. What is the long-term view after pediatric open-heart surgery?

Session 2B: Spirituality and Chronic Illness: Religion? Hope? Coping Mechanism? Wishful Thinking?

Join Dr. Paul Thayer as he explores the relationship between spirituality and chronic illness.

Individuals living with chronic illness often have a deeply felt experience of spirituality. This workshop will explore the spiritual experiences and questions of those living with acquired and congenital heart defects. Specifically it will discuss the differences between religion and spirituality, the difference between hope and wishful thinking, spirituality as more than a coping technique, and the relationship between hope and spirituality. This will be an active workshop inviting participants to share what has been helpful with others.

Session 3A: Focal Points for Developments in Pediatric and Adult Electrophysiology

Join Dr. Ed Walsh as he presents the focal points for developments in Electrophysiology as it applies to both adults and children.

The branch of cardiology that is involved with the study of normal and abnormal heart rhythms is referred to as “electrophysiology”. To operate efficiently, the heart must beat with a regular cadence that gives it ample time to pump blood out to the body along with sufficient time to refill with fresh blood between each beat, and it must repeat this process at a rate that is sufficient to meet the whole body’s needs. Heart rhythms that are too slow (bradycardia), too fast (tachycardia), or too irregular can result in decreased blood flow that reduces the delivery of oxygen and other vital nutrients to our organs. If the rhythm abnormality is relatively minor, this inefficiency in blood pumping is likewise minor, and a patient may only experience symptoms when trying to exert themselves during strenuous exercise. More serious rhythm abnormalities can cause symptoms even at rest, and in rare individuals, these symptoms can become quite severe, including the possibility of sudden death. Fortunately, the field of cardiac electrophysiology has now progressed to the point that nearly all types of heart rhythm disturbances can now be treated quite effectively.

Most patients with congenital heart defects have a normal heart rhythm. However, certain types of heart defects can occasionally result in abnormal development of the conduction tissues within the heart, and some types of surgical repairs can occasionally cause scar tissue at critical sites in the heart that interfere with normal rhythm status. This talk will review the progress that has been made in recent decades with arrhythmia prevention and treatment in patients with congenital heart defects, including:

1) New surgical approaches that reduces the likelihood of scar-related arrhythmias

2) New medications for treating arrhythmias

3) New catheter ablation procedures for treating arrhythmias

4) Advances in pacemaker and defibrillator therapy for treating arrhythmias.

5) Better identification of patients at risk for arrhythmias.

Family Entertainment Event

Join us for an off-site entertainment experience at Dave & Buster's in Woburn, MA.

From 12:00p - 2:00pm we will provide a buffet lunch in our own designated space, as well as a fun afternoon of games and good company.

The event is bring sponsored by It's My heart New England, so tickets are no cost and include lunch, refreshements, play points, unlimited video games, and more! Please register for the number of people coming or e-mail us at ne@itsmyheart.org

Educational Speakers

Meet our speakers.

Dr. Sitaram Emani

Boston Children's Hospital

Dr  Emani is the Surgical Director for the Division of Cardiovascular Critical Care and the Adult

Dr. Rahul Rathod

Boston Children's Hospital

Dr. Michael Singh

Boston Children's Hospital

Dr  Michael Singh is acutely aware of the unique challenges patients with congenital heart diseas

Dr. Ed Walsh

Boston Children's Hospital

Dr  Edward P  Walsh graduated medical school from the University of Pennsylvania and completed hi

Dr. Janice Ware

Boston Children's Hospital

Dr.

Samantha Butler, PhD

Boston Children's Hospital

Samantha Butler, PhD is an Assistant Professor in the Department of Psychiatry, Harvard Medical S

Anna Jaworski

Author, Radio Host, Heart mom

Anna Jaworski is Heart Mom to Alexander Jaworski, who was diagnosed with hypoplastic left heart s

Dr. Paul Thayer

Wheelock College

Paul Thayer teaches graduate and undergraduate child life courses including Child Health Systems,

Diane Pucci

Adult Living with CHD

Diane Pucci is a teacher to children with ASD.

Kim Edgren

Adult Living with CHD

Kim Edgren is co-founder of Wee Care for little people, Inc.

James McNulty

Adult Living with CHD

A cellular and molecular biologist, James McNulty spent a number of years in research and develop

Dr. Sean Hagenbuch

Maine Medical Center

Dr.

Brian Lenihan

ADULT LIVING WITH CHD

Brian Lenihan was born with four major defects to his heart: pulmonary stenosis, pulmonary atresi

Annie Ritchings

Adult Living with CHD

Annie Ritchings was born in Lima, Peru in 1979 with HLHS, pulmonary stenosis, double inlet right

Jon Ritchings

ADULT LIVING WITH CHD

Jon Ritchings Jr.

If you would like to join us as a sponsor, email organizer@carehopediscover.com

Meet our sponsors.

Register here for all events --- Contact admin@carehopediscover.com with any trouble registering. Register soon. Seats are limited. Children are welcome. Certified babysitting is included with Saturday Registration Fee.

Friday Meet and Greet
7:00pm

$25 per person meet attendees in a more casual setting
Appetizers with Cash Bar
Free WiFi at the Conference

Saturday Education Conference 
9am-5:00pm (registration opens at 8am)

$50 per adult by October 28 $60 / person after October 28
Snacks & Refreshments
Full-access to all Sessions
Babysitting (ages 0-12) is included with Paid Registration
Conference lunch 

Saturday Post-Conference Dinner
6:00pm

$30 per person network and build relationships
Full dinner with Cash Bar
Children's dinner price is $15
Hilton Garden Inn

Sunday Family Event sponsored by It's My Heart New England
DAVE & BUSTER'S Woburn
12:00 - 2:00pm

$0 per person your tickets will be given to you at registration
Off-site entertainment for the whole family
Join us for lunch and an afternoon of fun at Dave & Buster's in Woburn, MA

Venue

CONFERENCE VENUE
 

Hilton Garden Inn

450 Totten Pond Road, Waltham, MA 02451

+1 781-890-0100

www.hilton.com

Room rates are $125 (1 King) and $135 (2 Queens) per night (Nov 10 - Nov 14) and include breakfast for 2 Adults and 2 Children

Use the link below or Group Code: ITSMY

Make Reservations