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Who Is CCC
Meet The Community
About Heart-to-Heart Day
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Resources
Home
Who Is CCC
Meet The Community
About Heart-to-Heart Day
Event Schedule
Photos
Videos
Contact Us
Helpful Resources
Facebook
Donate
Register Today
Additional Resources
Books
Kids with Heart National Association for Children’s Heart Disorders Bookstore
Badges a book For Little Heroes
by Elizabeth Hunterton – Available through Amazon
Charlie the Courageous
by Joslynn Jarrett-Skelton, Adam Walker-Parker – Available through Amazon
Everest Strong: Reaching New Heights with Chronic Illness: An Inspirational Memoir
by Rob Besecker – Available through Amazon
Exclamation Point
by Saul M. Solano Jr. – Available through Amazon
ICD Connection: Living with an Implantable Cardioverter Defibrillator: A Collection of Patient & Family Stories
by Helen McFarland – Available through Amazon
It’s My Heart
by The Children’s Heart Foundation – Available through The Children’s Heart Foundation
Jeremiah the CHD Aware Bear and Friends: A Story for Children Touched by Congenital Heart Disease
by Phillip Wolf, Anastacia Reese – Available through Amazon
My Brother Needs an Operation
by Anna Marie Jaworski and Linda Ball – Available through Amazon
My Heart vs. the Real World: Children with Heart Disease, In Photographs & Interviews
by Max S. Gerber – Available through Amazon
My Open Heart
by Andrea Buginsky – Available through Amazon
Riley’s Heart Machine
by Lori M. Jones – Available through Amazon
Swim: A Memoir of Survival
by Bill Coon – Available through Amazon
The Beat Goes On
by Pritchett and Hull – Available through Amazon or through Kids With Heart National Association for Children’s Heart Disorders
The Hearts of a Girl: The Journey through Congenital Heart Disease and Heart Transplant
by Jessica Carmel – Available through Amazon
Zip-Line
by David Humphreys – Available through Amazon
The Heart of A Bear: Bear Gets His Heart Checked
by Renee Langstaff – Available through Amazon
Wonder
by R. J. Palacio – Available through Amazon
Articles and Online Resources
A+J Patient Advocacy
An Update on Channelopathies (a more scientific article)
Heart Rhythm Society Patient Resources
Automated External Defibrillators in the Public Domain. Am I Ready to Use One?
My Child Needs or Has an Implantable Cardioverter-Defibrillator
How to Respond to an Implantable Cardioverter-Defibrillator Shock
Improving the quality of transition and transfer of care in young adults with congenital heart disease
Coping With My Partner’s ICD and Cardiac Disease
Sexual Health for Patients With an Implantable Cardioverter Defibrillator
Downloadable PDFs
My Appointment Worksheet: Beginner
My Appointment Worksheet: Intermediate
My Appointment Worksheet: Advanced
My Appointment Worksheet: Rockstar
Organizations
Heart Rhythm Society
1325 G Street NW, Suite 400
Washington, DC 20005
202-464-3400
American Heart Association
7272 Greenville Ave.
Dallas, TX 75231
Customer Service: 1-800-AHA-USA-1
Conquering CHD
Organization to advocate for improved quality and outcomes through CHD education, research and awareness
Blog has many articles including how to navigate school:
School Intervention: A Complete Resource Guide – PCHA
ACHA
Adult Congenital Heart Association
3300 Henry Avenue, Suite 112
Philadelphia, PA 19129
(888) 921-ACHA
SADS Foundation
Sudden Arrhythmia Death Syndromes
4527 South 2300 East, Suite 104
Salt Lake City, Utah 84117
801-272-3023
Brugada syndrome
Long QT syndrome
Catecholaminergic polymorphic VT (CPVT)
HCMA
Hypertrophic Cardiomyopathy Association
18 East Main St. Suite 202
Denville, NJ 07834
973-983-7429
Saving Tiny Hearts Society
Organization started by Chicago CHD family to raise money for research of congenital heart defects
Camp Odayin
Camp for children with heart disease
651-351-9185
https://www.facebook.com/campodayin/