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Episode 34: Saving Tiny Hearts

February is heart month. Heart disease kills over 659,000 people in the United alone each year. In addition to that 40,000 children will be born with congenital heart disease (CHD) this year alone. When Francie Paul’s son Joshua was born with CHD she and her husband Brian decided to make a positive impact for their child and so many others. They founded the nonprofit Saving Tiny Hearts. A nonprofit organization that is determined to put an end to Congenital Heart Disease, which is the number one birth defect of children

Francie was one of my very first interviews over a decade ago and her story and work have continued to inspire me. I recently had a chance to reconnect with Francie and her board chair Dr. Larry Kluge to discuss the incredible work Saving Tiny Hearts is doing. If ever there were two humans with huge hearts to mend all the broken ones it’s Francie and Larry.

 

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what Saving Tiny Hearts does?

Larry Kluge: Every day, we’re looking to raise as much money as we can to fund as much research as we can. Nearly every dollar we raise goes to support research. Recognizing how important it is that difference in raising money for research makes in the lives of children. We’ve already found that that was the case, in terms of many of the projects that we have funded have actually changed and improved the lives of children born with congenital heart defects. This is what Saving Tiny Hearts does.

Charity Matters: What was the moment you knew you needed to act and start  Saving Tiny Hearts?

Francie Paul:  On August 11, 2005, we had our first child, a beautiful baby boy named Joshua Bennett Paul. My pregnancy was “normal” and the doctors reported nothing “remarkable” about it.  Four hours after his birth, Joshua was rushed from the local hospital to Children’s Memorial Hospital in Chicago. Joshua was diagnosed with Severe Complex Congenital Heart Disease.

Like many parents in the same situation, we became very angry and considered litigation as a course of action. After meeting with high-profile medical malpractice attorneys, we decided this course of action was not for us. In the elevator on the way out of the attorney’s office, we called Brian’s corporate attorney to find out how to start a public charity. We wanted to channel our energy into something positive instead of negative.  On September 1, 2006, the United States Internal Revenue Service officially recognized the Saving tiny Hearts Society as a tax-exempt 501(c)(3) organization

Charity Matters: What are your biggest challenges?

Francie Paul: Our challenges.  I have a good friend who said it’s her first instinct not to talk about it. And I always say, if we don’t talk about it, the world won’t know that our kids need help. Right?  They cannot yet fix what Joshua has. So I need medicine to catch up faster than what we’re doing.  I wish people knew that the research we fund could save their aunt’s life,  their mother’s life, and could save their life

 Joshua’s heart surgeries are a direct result of ongoing research. There are not yet adult survivors that have had his heart surgery versions. So like every year is a blessing and every year is also a race against the clock for me. I feel like I could shout to the world and say, “Everybody if you knew how much of your money directly goes to the scientists that our medical advisory board decides?” They only pick what is most worthy for Saving Tiny Hearts grants.  If people knew that their money went to actually change the world, by changing medicine and science. How remarkable the future could be.

Charity Matters: What fuels you to keep doing this work?

Larry Kluge: Our motivation remains the same year after year, month after month, day after day, as we struggle to get the word out and raise those urgently needed funds to support more and more research that will ultimately save the lives of children born with CHD.  Our work has just begun and will continue until we can eradicate CHD.

Charity Matters: When do you know you have made a difference?

Francie Paul:  I can but I can share a quick story about a boy. His name was Gray. He collapsed on a hockey rink, and from sudden cardiac death. And it just so happens that one of Joshua’s CV surgery nurses was there. So she ran and people were trying to do CPR. She said,” Call 911 Get me the AED.” She did CPR on him using the AED and saved his life.

We had Gray come to our gala and it happened to be his high school homecoming, so he brought his date. Gray got up there at our gala and said, “You know, I’m one in a million kids this happens to.”  That night we also had a doctor come up whose research we funded. And the doctor said to Gray, ” You’re not one in a million. This happens more than you realize. But I’m coming up with a study that will prevent it from happening to kids just like you.” 

Charity Matters: Tell us what success you have had and what your impact has been? 

Larry Kluge: Success is continuing since 2006 on our mission to fund life-saving research.  Sixteen years have gone by and we are still here committed to raising funds to support life-saving research.  Our Medical Advisory Board continues to review and evaluate all the grants that we receive year after year and determines which ones are most worthy of our funding efforts.  We have raised over 6 million dollars and funded 60 research projects.  Many of the research projects funded have already made a difference in the lives of children born with CHD.  Not only children but today after funding the development of a heart in a lab, an adult has received the first heart transplant from a pig which stemmed from research we have funded.

Charity Matters: If you could dream any dream for your organization, what would that be?

Francie Paul: To eradicate CHD.  To have a world filled with healthy children never to be born again and suffer from CHD.  Live long and healthy lives without fear or restrictions.

Charity Matters: What life lessons have you learned from this experience?

Francie Paul:  It’s been a humbling journey. And I think, through those moments of heartache, you see the goodness in people.  I think you see the goodness and the true heart and passion in people.  When somebody raises money for research for us, and my baby was given a chance… And I can only dream about what the future will be like because of everybody’s helping everybody.  Really when everyone comes together it is just the best. And just, I feel like the best is yet to come. And for lack of a better way of saying it, I only dream for it to only be bigger and better.

Charity Matters: How has this journey changed you?

Larry Kluge: Recognizing how fortunate we are and how we can be of help to others is what we strive for day after day. My personal commitment is to make a difference in someone’s life every day.  To put a smile on a child’s face, to make someone laugh, or just bring some cheer and hope to another individual is what life is all about.  Making a difference.

CHARITY MATTERS.

 

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Causes

Looking back, a year in review

As we begin to wrap up the year and look back at what we accomplished in 2017, I am always amazed by the incredible nonprofit founders we met this year. Their hardships, determination and passion to turn their journey into an organization that gives to others…. simply an endless source of inspiration.

So before we look ahead, lets take a moment to recall some of these extraordinary people we talked to in 2017:

Katie Quintas with Here to Serve showed us that in the face of adversity of having a husband and a son with cancer, she would create an organization to serve families whose children have cancer. Katie combines technology , her ability to connect and compassion to help families with items from food, to groceries to medical expenses.

Francie Paul with Saving Tiny Hearts, took her experience having a newborn with congenital heart disease to create an organization that funds research to save these tiny babies born with congenital heart disease. One of the loveliest humans with the biggest hearts I have ever spoken too.

Rebecca Pontius of the Do Good Bus. Rebecca and her friends decided that doing good together is fun and makes the world better, so she created a nonprofit that brings groups of people together to volunteer and do good. A fun way to serve, connect and make a difference.

Andy Goodman of the The Goodman Center shared how to use the power of storytelling as a tool to impact the world.

Two amazing women, Yasmine Johnson and Jules Leyser of Alliance of Moms created an organization to break the intergenerational cycle of teen mothers in foster care and inspired me with their incredible organization. These two women are beautiful inside and out and ones to watch for sure!

Ford and Heidi Johnson, Jennifer Hull, daughter Josie and Sienna Dancsecs

Jennifer Hull and daughter Josie, founders of Once Upon a Room, transform hospital rooms for the sickest children, think Extreme Home makeovers on hospital rooms. Their story is beyond inspirational and one for all to see.

Hand to Hold‘s Kelli Kelly inspired us all with her story of being the mother of a premature baby and the struggles that ensued. The result is her incredible organization that supports families through this challenging time. A beautiful story of love and compassion.

Hope and Comfort‘s Jeff Feingold’s amazing story of taking his child’s birthday party and turning it into a nonprofit that provides soap, toiletries along with  Hope and Comfort to thousands of children in the Boston area.

Annie Cannons The incredible story of Laura Hackney and Jessica Hubley’s remarkable adventure to end human trafficking in the United States. A nonprofit that not only teaches women how to write computer code but gives them skills, an education, hope and the ability to break the cycle and create change for others. Two of the most inspiring women and the most brilliant organization that is approaching a horrific topic in a fresh and empowering way.

JoAnn Thrailkill of Pablove showed us that even when your loss is overwhelming, there is love and hope. JoAnn shared the tragic story of losing her son, Pablo and creating a lasting legacy of hope for children with cancer. JoAnn’s  words haunt me, “The experience of starting Pablove has allowed me to always see the light. I am now reminded daily of the love that surrounded me during one of the most difficult times in my life.”

It is people like JoAnn and all the other incredible people we met this year that will inspire me moving forward into 2018. The sources of inspiration are endless, the people awe-inspiring and there are so many others we met this year that I hated not including. My dream for the New Year is to share as many of these heroes as possible with the world. It is obvious to me that we simply need more heroes.  They are all right here, every week, sharing their challenges, journey, humanity and hope for us all. Thank you for subscribing via email to a little soul and inspiration this year, for liking our Facebook page, commenting or sharing a post. It takes a village to spread the word of light, hope, goodness and charity.

Wishing each of you blessings in the New Year filled with love, gratitude and kindness to all.

Charity Matters.

 

Sharing is caring, if you are so moved or inspired, we would love you to share this to inspire another.

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

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Charity Matters Inspiration

The heart warming follow up of Saving Tiny Hearts

“If someone had raised funds for research for us 30 years ago and our baby was given a chance to live. Ten years from now will be a whole different ball game into medicine, science and technology into heart defect research.  We don’t want to wait for what doctors say ‘will be….’ we want to fund research to change the future for ‘what can be…’ for all children, like my beautiful Joshua suffering from heart disease.  Out of our heartache, there is hope….”

The words above were sent to me five years ago from non-profit founder, mother and champion for families dealing with congenital heart disease, Francie Paul.  I spoke with Francie and board chair of Saving Tiny Hearts, Larry Kluge, to see what has happened since they began this journey over a decade ago to bring awareness and research to Congenital heart disease .

CM: What do you want people to know about Congenital Heart Disease?

Francie: I want people to know that twice as many children die from heart disease versus all pediatric cancers combined and that cancer receives five times the funding for research.

Larry: Over a million children are born each year with congenital heart disease.

CM: What is your goal at Saving Tiny Hearts?

Francie: Our goal is to fund a project that will not only save our son’s life but to ensure that no one else should ever have to go through this.

Larry: We have been able to fund over 30 research projects that keep getting us closer to making this a dream a reality. We want to find the answer that makes Saving Tiny Hearts obsolete.

CM: What keeps you going?

Larry: The love, passion and support of our community is extraordinary and the researchers we support.

Francie: People carry you through your darkest days and they have made our journey all the more humbling. It is the heart, hope and passion of our team. We are all a part of this.

As Francie said, five years ago “Out of our heartache there is hope.”

 

Charity Matters.

 

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

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Charity Matters Inspiration

Saving Tiny Hearts….

February is heart month. Over the years, I have interviewed so many people with such heart warming stories, but one that has truly touched me is the story of the Paul family and their journey as parents of a child living with congenital heart disease.

You may remember them, because they are extraordinary people who took their pain and turned it into a non-profit foundation called Saving Tiny Hearts.

When I first interviewed Francie Paul five years ago she sent me this note, which I wanted to share here today. On friday, I will tell you what the Paul Family is doing now.

 

Thank YOU for your beautiful post– we are extremely honored to have Saving tiny Hearts featured.

We did have high profile malpractice attorneys at our doorstep…practically before we were out of the hospital from Joshua’s firstheart surgery…it wasn’t who we were…our life’s mission came out of the greatest need for medicine and science into heart defects to catch up to support all children, like our little love, afflicted with heart defects.

Starting the Saving tiny Hearts Society began before our Joshua’s second heart surgery (- he has had 3) at 3 months old, after pediatric heart surgeons told us that there was a desperate need to fund research, that young hungry scientists were being turned down for government funding because they didn’t have enough monies to beef up their revolutionary proposals….which is where we would come in, to provide the seed money for it all.

Most people don’t realize that so many babies and children do not survive because of lack of research to save them.  We didn’t know that it was the #1 birth defect in the world and the #1 cause of birth defect related deaths….we didn’t know that it could happen to our baby.

Someone had raised funds for research for us 30 years ago and our baby was given a chance to live. Ten years from now will be a whole different ball game into medicine, science and technology into heart defect research.  We don’t want to wait for what doctors say ‘will be….’ we want to fund research to change the future for ‘what can be…’ for all children, like my beautiful Joshua suffering from heart disease.  Out of our heartache, there is hope….

I don’t know if you had seen the movie ‘Something the Lord Made’ but it was an HBO movie about one of the very first heart surgeries ever performed, the Blalock-Taussig Shunt (-BT Shunt). It was the very first successful heart surgery that began with a blue baby as doctors were afraid to touch the heart and felt that of these babies wouldn’t live otherwise, so they would try this most revolutionary procedure on a baby first.  Nearly 60 years later,at 4 days old, after our baby was stabilized, he had a Blalock-Taussig shunt.

We can’t thank you enough for sharing our story; it has truly been a humbling journey for us and in the greatest of heartache, we have seen the very best in friends.  Can’t wait to read more Charity Matters and see all of the amazing things that are happening because of you.

With Gratitude & Very Best Wishes,

Francie

 

Charity Matters.

 

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

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Health

Saving Tiny Hearts

There is always that defining moment. We each have them, some bigger than others.  On August 11th, 2005 Francie Paul had that moment when she gave birth to her son, Joshua. Francie’s moment was more than that of a proud new and tired mother but one of concern.  Four hours after his birth, Joshua was rushed from the local hospital where he was quickly diagnosed with Severe Complex Congenital Heart Disease.

It is there is that moment, that small space in time that having a sick child will either destroy you or define you. The Paul family had that moment, frustrated and angry with their son’s condition.

“Like many parents in our position, we became very angry and once the dust settled we considered litigation as a course of action. After meeting with high-profile medical-malpractice attorneys in Chicago we decided that this route was clearly not for us. In the elevator on the way out of one of the attorney’s offices we called Brian’s (my husband) corporate attorney to find out how to start a Public Charity. We felt channeling our energy into something positive instead of something negative (like litigation) would be a much healthier and more fulfilling way for us to focus our efforts.”

The result of that frustration and emotion was channeled into the creation of Saving Tiny Hearts.org  Since 2006, the Saving tiny Hearts Society has been working to fulfill its mission of raising seed money for grossly under-funded, lifesaving research of congenital heart defects. This seed funding acts as a bridge for this research to millions of dollars of extramural funding from the National Institute of Health. To date Saving Tiny Hearts has funded five (5) research projects.

Today, Joshua is thriving and the Paul family’s change of heart from anger to action became that moment that matters. Their heart has helped thousands of tiny hearts. Charity Matters.

Copyright © 2012 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

 

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