Page last updated 4/19/2001
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Kids With Heart National Assn. for Children's Heart Disorders
Kids With Heart was formed in 1985 by Sandy Wheaton (Luke - double outlet left ventricle) and Sharon Prevost (Trisha-transposition of the great vessels). In 1989, the group was inherited by Michelle Rintamaki (John - tetralogy of fallot with pulmonary stenosis) and Kathy Perensteiner (Jessica - ventricular septal defect and pulmonary stenosis - which did not show up until she was 5 years old) who has since moved out of town and is greatly missed. In 1991, we applied and received our IRS standing in the form of 501 (c) (3) nonprofit, tax exempt status. We also developed an educational philosophy that Kids With Heart, as a group, would try to provide as much informational material regarding heart children, their defects, and their care, as possible to parents to help them in making decisions regarding their child's care. We also strive to provide emotional support to parents, siblings, and the heart children, themselves, as they strive to achieve a somewhat-normal lifestyle.
A second mission that has become a priority for Kids With Heart National Organization for Children's Heart Disorders, Inc. is that of public awareness of congenital heart defects. We need to make the general public aware of what these families and CHD survivors, themselves, deal with as they reach adulthood.
We are striving to achieve these goals by networking all local support groups, nationwide, to work together to accomplish this. For this purpose, we maintain a National Database of Local Support Groups for Congenital Heart Defects and will link families to one in their area, if available. We also help parents to get a group in their area started, if they request assistance. This is being accomplished, in part, due to several ambitious moms that we have met on internet listservs, message boards, etc for parents of children with congenital heart defects. We are currently in the process of establishing subsidiary groups of Kids With Heart in Florida, Maryland, and New York.
We maintain a National Database of families affected by congenital heart defects, whether they be adult congenital heart defect survivors or families of children with congenital heart defects.
In 1994, we formed a Board of Directors which includes Michelle Rintamaki - president, Gerri Stempa - vice president, Melody Burkard - Treasurer, and Mary Mettler - secretary. Our Advisory Board includes Barb Kopperud, Connie Rodrian, Debbie Schuette, Laura Ulaszek, Steve Stempa (internet/ web page advisor), and Sharon Prevost (original founder of Kids With Heart).
In May, 1997, Steve Stempa (dad to Luke, 3, Hypoplastic Right Heart Syndrome and Cleft Lip and Palate) designed, donated, and maintained the Kids With Heart Web Page at www.kidswithheart.org. It was through his efforts and success with this web page that Kids With Heart National Organization for Children's Heart Disorders, Inc. came to be. The membership for this web page is now funded through the Kids With Heart fundraisers.
Through the internet, Michelle Rintamaki met Laura Ulaszek (mom to Brian, Hypoplastic Left Heart Syndrome) from Illinois. Upon discussion about my (Michelle's) dream for a national organization, Laura has helped make this dream a reality.
Our Advisory Board is in the process of being updated to include professionals from around the country.
All work done by Kids With Heart is currently volunteer and is done
by other heart parents. All donations are used to help fund the
expenses of the group. All funding of the group is done through
voluntary donations, proceeds from the sale of the Matty's Heart
Book, and donations from Concerned Heart Club - Green Bay, Wisconsin.
We are not affiliated with any hospitals or other organizations
that are heart or birth defect related in nature.
Visit the Kids With Heart home page.