Project Adam
Project ADAM is a national program founded at Children’s Hospital of Wisconsin that educates and equips schools to respond to students and staff who have a sudden cardiac event. This is accomplished by ensuring that schools have personnel and procedures in place to respond to the event as well as automated external defibrillators strategically located throughout the campus. Once the personnel, procedures and AEDs are in place, the school can apply to be identified as a “Heart Safe School.”
Heart Transplant-Related Organizations and Websites
American Heart Association
Offers easy-to-read medical information and pictures on congenital heart defects and children.
www.americanheart.org
Children’s Organ Transplant Association
An organization that works to make lifesaving organ transplants accessible to all COTA works with individuals of all ages to arrange the necessary funding for transplant expenses. Call 1-800-366-2682.
www.cota.org
National Foundation for Transplants
National non-profit organization that offers a program of healthcare and financial support services and patient advocacy for transplant candidates, recipients and their families. Call 1-800-489-3863.
www.transplants.org
Trio
A non-profit organization committed to providing support, awareness, education and advocacy to those involved with organ transplants. Call 1-800-TRIO-386.
www.trioweb.org
United Network for Organ Sharing (UNOS)
A non-profit membership organization that manages the National Organ Procurement and Transplant Network (OPTN) and U.S. Scientific Registry under contracts with the U.S. Department of Health and Human Services. Call 1-800-TXINFO-1.
www.unos.org
World Transplant Games Federation
The organizing body of the World Transplant Games with the purpose to “visibly demonstrate the benefits of successful organ transplantation, work to increase public awareness of its success and thereby increase organ donation rates, as well as promote the full rehabilitation and wel-lbeing of our participants.”
www.wtgf.org
Adjustment and Coping Websites
Band Aids and Blackboards
Designed for children with medical challenges of all types, this site is highly interactive, with information for kids, teens and adults.
www.lehman.cuny.edu/faculty/jfleitas/bandaides/index.html
Mind Your Mind
Award-winning site for youth by youth, offering information, resources and tools to help manage stress, crisis and mental health.
www.mindyourmind.ca
Sibling Support
Support to individuals who have siblings with special needs.
www.siblingsupport.org/sibshops/index_html
Source: Pediatric Heart Transplants: A Guide for Patients and Families, Pediatric Heart Transplant Study Foundation, Children’s Cardiomyopathy Foundation
Congenital Heart Disease Information
Adult Congenital Heart Association
American Academy of Pediatrics
American College of Cardiology Foundation
Adult Congenital Heart Association
American Heart Association Congenital Heart Defects
Cove Point Foundation Congenital Heart Disease
Camp for Children with Heart Disease
Education and Research Organizations
Cardiac Arrhythmias Research and Education Foundation
Children’s Cardiomyopathy Foundation
Support
Ollie’s Branch is an access point to mental health specialists that support heart families (including the heart warrior and their parents, siblings, grandparents, and other primary caregivers) through therapy sessions offered at no cost to the recipient. Ollie’s Branch is a resource that families can continue to take advantage of throughout their – and their child’s – lifetime.
Our diverse community of therapists specializes in the trauma heart families face, and they create a safe forum while lessening the stigma surrounding mental health. To learn more or if you would like to be matched with one of the therapists in our Ollie’s Branch community, visit our website at theohhf.org/ollies-branch.
Mended Little Hearts is a nationwide organization for parents, caregivers and families of children with heart defects/disease that provides resources and a caring support network to help families work through overwhelming emotions involved with having a child with a heart defect. Mended Little Hearts helps families move forward to find laughter, healing and hope.
Your local San Diego chapter members invite you to join us at any of our upcoming VIRTUAL Mended Little Hearts of San Diego events until we are able to meet in person after COVID-19 restrictions are released.
Community events are a great way to meet other families and caregivers in the CHD community to share resources or experiences to support each other.
Mended Hearts recently created a new program called “Young Mended Hearts” to give hope and support to teens and young adults who have heart disease, including congenital heart disease (CHD).
Our group has a new teen coordinator, Kaiden Simon, that will be planning some Young Mended Hearts in-person events for our local San Diego Chapter starting early 2023. If you are a teen/young adult or know a teen/young adult looking to meet similar people, be on the lookout for details about those events soon.
For more information, contact our Teen Coordinator, Kaiden at: kaidensimon8@gmail.com or SanDiegoCA@mendedlittlehearts.org
Questions about our Mended Hearts or just need another heart parent to talk to?
Please reach out to us by contacting our group leaders:
- Lead Coordinator: Julie Marshall (760-583-8515 or mlhofsd@gmail.com)
- Bravery Bag Coordinator: Cindy Edgerly (edgerlycynthia@gmail.com)
- Teen Coordinator: Kaiden Simon (kaidensimon8@gmail.com)
Download the Digital Little Heart Guide: https://mendedhearts.org/heart-guides
Become a member at https://mendedhearts.org/connect/member-enrollment.
Image Upload
The Heart Institute at Rady Children’s Hospital-San Diego is proud to offer families and referring providers/facilities a secure way to share medical images.
Ambra is an industry-leading cloud-sharing platform that enables secure, reliable sharing of medical imaging data between hospitals and patients.
To send us images such as cardiac MRI, cardiac CT, catheterization studies, and echocardiograms, please see the guide below, then visit
https://radychildrens.ambrahealth.com/share/rady_cardiology.