Communities in Action: Kindred Hearts

Sisters by Heart is so proud to be a part of such an active and engaged heart community! Although we are the only support organization we're aware of that specifically reaches out to HLHS families prenatally, there are many wonderful organizations in the heart community that reach out to our HLHS and other CHD warriors once they've already arrived. Today, we wanted to share our Top 10 list of these kindred hearts - other organizations and support groups who provide a great deal of assistance and support to our warriors and their families. We know many readers of our blog are expectant HLHS parents and parents of HLHS newborns. It's our hope that this list will help you to navigate the groups available to provide support. Stay tuned for future blogposts to hear more about some of the organizations listed!

1.   Congenital Heart Information Network - national organization that provides reliable information, advocacy, support services, financial assistance and resources to people affected by CHDs. Also includes information on Spencer’s Fund, which provides help to families affected by CHD’s by providing financial assistance with expenses incurred during extended or far from home clinic appointments and hospital stays.

2.   The Whole Hearts Foundation – recently started Foundation that supports families with children suffering from congenital heart defects.

3.   Mended Little Hearts – a support program for parents of children with heart defects and heart disease. Offers resources and a supportive network of families.

4.   The Erika Kate Foundation - provides short-term assistance to families in the midst of medical crisis, working with social workers in pediatric heart centers nationwide to bridge the gap for those whose short-term needs exceed available resources.

5.   Jack of All Hearts - raises funds for cardiothoracic research, assists families in need of moral support, and provides financial resources to those in need due to outstanding medical bills related to pediatric cardiac care. 

6.   Little Hearts – provides support to CHD families by way of an Annual Member Picnic,  Awareness Information & Suggestions, Awareness Products, Discussion Board, Fundraising Ideas, Meetings, News Email Group, Newsletter and Parent Matching Program.  

7.   Beads of Courage – Through the use of strings of beads representing medical procedures, helps children with serious illness record, tell and own their stories of survival.

8.   Icing Smiles - Provides custom celebration cakes and other treats to families impacted by critical illness of a child (provides cakes to both the affected child and siblings).

9.   Heartfelt Couture – creates personalized hospital gowns and prayer pillows for children / recovering from open-heart surgery and hospitalizations.

10. Mia Marrone Heart Foundation - supports HLHS families and funds research for HLHS.
 

We are so privileged to be counted among these organizations who support and love our HLHS warriors and their families.