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

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

02/25/2026

Disability Advocacy Day is back in-person this year! Registration closes March 2nd so register today. Join us in Madison on Thursday March 19th with other advocates from around the state and meet with your elected officials. This is a great opportunity to share your story and educate your legislators on disability rights!

Registration is free but required to attend. Register by March 2nd.

Register here: https://bit.ly/DAD2026
Spanish registration: https://bit.ly/DAD2026Span

02/25/2026

https://www.facebook.com/photo?fbid=1488090413318541&set=a.751304440330479

Disability Advocacy Day is back in-person this year! Registration closes March 2nd so register today. Join us in Madison on Thursday March 19th with other advocates from around the state and meet with your elected officials. This is a great opportunity to share your story and educate your legislators on disability rights!

Registration is free but required to attend. Register by March 2nd.

Register here: https://bit.ly/DAD2026
Spanish registration: https://bit.ly/DAD2026Span

02/16/2026

Make sure you are ready to vote in the 2026 elections. Our “Make Your Plan to Vote” fact sheet will help you prepare for the February 17 Primary and the April 7 Spring Elections.
View the fact sheet here:

Get ready for the upcoming 2026 elections! Our 2026 factsheet will help you get ready for the next election. It will show how you can: register to vote. get a Wisconsin identification (ID) card for voting. vote at the polls.…

01/24/2026

Everyone everywhere knows someone somewhere 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! Please join us and make every day Congenital Heart Defect Awareness Day! Thank you!

Several years ago, one of our adult congenital heart defect survivors wrote this poem to help let non-chd affected people understand a little bit more about being both a warrior and/or the family of a warrior.
With February 7th thru the 14th being Congenital Heart Defect Awareness quickly approaching, I would like to share this poem with you, especially because he has since lost his battle. Thank you, Steve Catoe, for putting this into words so eloquently and giving us permission to share it: May you rest in peace and know we miss you!
WHO ARE WE?
"Who Are We? Start counting… we’re roughly 8 out of every 1,000 people (or 1 out of every 125, if you want a number you can get your head around.) We represent both genders and we are all ages. A million of us are adults, and about 800,000 of us are children.

We’ve made it through surgeries, hospital stays, infections, Endocarditis (infection of the heart), pacemakers, and heaven know what else. We’ve given gallons of blood, one vial at a time. We’ve fought back against tremendous odds. We’ve been so sick that we’ve scared the world’s best doctors witless… and then amazed them even more when we’ve fought back.

We’ve celebrated our victories and we’ve mourned our losses. We know that most of those who came before us died, including 14 of the first 70 to have the Blalock-Taussig Shunt. We know that most of us shouldn’t even be here and so we live every moment as if it is our last – because it could be.

We’re Cardiac Kids and Heart Warriors. We have an amazing inner strength, but we are terribly fragile at the same time. We refer to our parents as Heart Dad and Heart Mom, and we use those titles as Badges of Honor. Why?

Because they DESERVE them! They were the first ones to discover that a heart defect doesn’t just break one heart, it breaks three.

We work, we play, we pay our taxes and we live our lives. We’re in your community, in your church, in your school, in your office, and quite possibly in your home. We move a little slower, do some things a little differently, but we usually get along without causing a fuss.

We are people living with Congenital Heart Defects.

Steve Catoe
42 year old male with Tricuspid Atresia

01/23/2026

Are you looking for more information on Social Security Disability benefits? You're in luck! WI FACETS will be presenting information on Social Security Disability benefits, who qualifies, how to apply, appeal and post entitlement issues. The webinar will be presented by Elida Elizondo on February 4th from 12-1 pm CT.
Register here: https://us06web.zoom.us/.../WN_pgpUAViZSC6nx8KXWZ2i2w...