Kids With Heart National Assn for Children's Heart Disorders, Inc

09/29/2026

Happy Birthday to our son, John! Definitely appropriate that they picked his birthday to be World Heart Day!!!! John was born with tetralogy of fallot and is now 39 years old! Amazing! Thank you to all of his cardiologists, Dr David Friedberg and Dr Ray Fedderly, Dr Michael Earing, Dr Matthew Buelow,and his heart surgeons, Dr S. Bert Litwin and Dr James Tweddell, all of his nurses and medical care givers at Herma Heart Institute at Children's Wisconsin and the Medical College of Wisconsin and his amazing pediatrician, Dr Wm Joseph Kellner! Hope I didn't miss anyone! Without their outstanding care, he would not be doing as great as he is! HAPPY BIRTHDAY, JOHN! Love you!

07/21/2026

The Survival Coalition of Wisconsin Disability Organizations released a statement today about the U.S. Department of Justice rescinding its long-standing guidance on enforcement of the Americans with Disabilities Act’s (ADA) integration mandate and Olmstead v. L.C.
Read their full statement here: chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.survivalcoalitionwi.org/wp-content/uploads/2026/07/SurvivalCoalition_Statement_USDOJRescindADAGuidance_072026-1.pdf?fbclid=IwY2xjawTLrxhleHRuA2FlbQIxMABicmlkETFHaTZHRDZ3dFFnZ3ZvOFpnc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHvwJjImhNu1QHJdJ1ltxN24Si7wzpaoPWJYKTSBuWZNxCbqFEMQ4-e9YZvLS_aem_MzbV3kMkQ5CHyuwG3qis0Q

07/07/2026

Keeping you informed with beneficial resources: https://www.facebook.com/photo/?fbid=1454013339865353&set=a.629102412356454

🍳 **There's still time to register for Cooking Up Some Advocacy!**🍪

Join us July 27–30 for a hands-on summer independence series designed for individuals with disabilities ages 15–23.

Participants will build confidence through:
✅ Kitchen safety & meal preparation
✅ Self-advocacy & disability history
✅ Social & communication skills
✅ Everyday independent living skills

📍 Options for Independent Living
555 Country Club Rd., Green Bay

Brown and Outagamie County CLTS programs have indicated they will support participation for eligible participants. Private pay is also available, and we are continuing to explore additional funding opportunities. (We'd also love to help you reach out to your specific Case Manager)

Have questions about the program, funding, or whether it would be a good fit? We'd love to talk with you!

📧 [email protected]
📞 920-393-1035

Please help us spread the word by sharing this post with families, educators, service providers, and anyone who may know someone who would benefit from this opportunity.

Empowering everyday independence starts with opportunities like these.

06/21/2026

Happy Father's Day from all of us at Kids With Heart National Assn for Children's Heart Disorders, Inc! Hope you are treasuring the day with your dad and/ or your children! Thank you for all you do!

06/18/2026

Please check if this may help your family: https://www.facebook.com/photo/?fbid=1429662255858888&set=a.547567814068341

While federal changes may create uncertainty, WI FACETS remains committed to supporting families. We are here to observe closely and will continue to inform, support, and advocate for families at every step.

05/04/2026

This is so fantastic! https://www.facebook.com/photo?fbid=1294588409533630&set=a.258600089799139

The Children's Heart Foundation is funding new a research project by William Goodyer, MD, PhD (Stanford University School of Medicine), titled: “Precision Treatment of Ventricular Arrhythmias in Congenital Heart Disease”.

Abnormal heart rhythms known as “ventricular arrhythmias” (VAs) are one of the leading causes of death in children born with congenital heart disease. This new CHF-funded research aims to change that by delivering medication directly to the heart, where it’s needed most. Using an innovative “smart” drug-delivery approach, researchers hope to control life-threatening arrhythmias more effectively while reducing harmful side effects to the rest of the body.

The goal: safer, more precise treatments—and more lives saved. ❤️

04/20/2026

I have been contacted by a mom who has requested to connect with another mom who has been or is in her situation. If you are able to assist, please contact me at [email protected] or you can fb message me at michelle rintamaki Here is the situation: "I need to talk to other parents who have a adult child that needs a heart transplant. My son needs a heart transplant but does not want it. I need to talk to someone else who is watching their child who is having life threating issues causing their child to be rushed to the emergence room. How do they deal with the stress of not knowing how much time their child has to live." Thank you to anyone who can relate. Michelle L. Rintamaki
President
Kids With Heart National Assn for Children’s Heart Disorders, Inc.
[email protected]
www.kidswithheart.org
page https://www.facebook.com/kidswithheartnachd1985/ www.kidswithheart.org

Almost everyone knows someone affected by congenital heart defects and many of them think they are the only ones. Would this be you or someone you love? You are not alone, we are here for you.

04/07/2026

Some friends just get it from day one 💙

But Camp Victory is about so much more than creating lifelong friendships. It’s about a community that understands you, counselors who help build your confidence, and a whole lot of unforgettable fun—from horseback riding to campfire nights under the stars.

Read More and Register Here: https://marfan.org/campvictory

04/07/2026

VOTING DAY: We know you already have a lot to manage. Bringing your child with you to vote might not always be easy—but it can be meaningful. When our kids come along, they see that their family’s voice matters.

They see that voting is one way we speak up about the things that affect our lives. It can also lead to simple conversations about choices and how decisions are made. These small moments help our kids feel included and important.

Even a quick trip to vote can send a strong message: your family matters, and your voice matters.

If it works for your family, consider bringing your child with you when you vote. It’s a way to show them what it means to speak up.

Confirm your polling location here: myvote.wi.gov

04/07/2026

Today is election day!! Polls are open until 8 pm. If you are in line by 8 pm, you can still vote. Call the Disability Rights Voter Hotline if you run into any problems - 844-347-8683.

Graphic says Vote Today with a smiley face.

Wisconsin Disability Vote Coalition