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Heart Disease

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A camp with heart

While I know it is February and summer and camp seem to feel like a million years from now, I had an incredible conversation last week with an amazing human named Lisa Knight, who runs a camp (Camp del Corozon) for children who are living with heart disease. Since February is National Heart month this seemed like the perfect time to discuss our mutual challenges of running nonprofit camps but more specifically Lisa’s incredible work as a registered nurse and nonprofit founder, serving children with heart disease. I hope you enjoy our conversation half as much as I did.

Charity Matters: What was the moment you knew you needed to start Camp Del Corozon?

Lisa Knight: In 1995, I was working with Dr. Kevin Shannon with pediatric heart patients and we had a mother who came in to see us. Her son had multiple heart surgeries and was depressed. He didn’t want to go to sleepover or PE class because he was embarrassed about all of his scars and he didn’t feel like a “normal kid.” I suggested to Dr. Shannon that maybe we should try to send him to camp and began to look for a camp that could manage his health challenges or that would take him. There was only one, it was very far away and very expensive. So I suggested that we try to create our own.

Dr. Shannon loved the idea. I reached out to my friends in Catalina that had a camp and asked if we could come for a week with some heart patients, they agreed. We asked all our doctor and nurse friends to volunteer and within two months we had 49 heart patients and 100 volunteers coming to camp for free.

Charity Matters: What challenges did you have?

Lisa Knight: We had NO money, We maxed out credit cards, were not totally sure what we were doing but we were sure we should be doing this. Then we had a surgeon named Jerry Bucklin, who gave us $5000 to make it happen and we did.

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

Lisa Knight: I get so filled up by it all.  These kids have survived death, there are not camps for these types of kids due to their medical conditions. It transforms them. You see them show each other their scars. The most rewarding thing is when you hear children call you by your camp name, when you see them years later not at camp.  This year our first camper is coming back as a counselor, so to see not only these children grow up and give back but to watch my own 29-year-old daughter getting even more involved as she takes on more responsibility with her role at Camp del Corozon, is so rewarding. 

Charity Matters: Tell us about your successes at Camp del Corozon?

Lisa Knight: I think our successes is that thousands of children have been able to come to camp, to make friends, become more confident and just feel like regular kids.I think back to when we began and am so proud that it is continuing and going on. I get joy out of all our success, each child, each camp. This summer we will have close to 400 campers who will come to camp for free. Twenty-three years later that feels pretty amazing.

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

Lisa Knight: I’ve learned so much, how to dream dreams, connect the dots and make things happen. I have learned gratitude after having so many struggles and I have learned that there is nothing better in life than service, you simply cannot be happy without it.

Charity Matters: How has this changed you?

Lisa Knight: I feel that Camp del Corozon was just supposed to be. This is my whole life. I feel that I am on a chess board and God just pushes me in the direction I am supposed to go.”

Charity Matters.

 

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Copyright © 2018 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.

February is all about heart….

It is February and National Heart Month, tomorrow is Valentine’s Day and for next 48 hours the world will be full of hearts, candy, paper and real ones. This is the time of year when we think about love and what our hearts do and it is also a time to take a pause and think about what happens when our hearts are broken?

One out of 110 children will be born this year with congenital heart disease, over 40,000 children. What does that look like for those families? Over the years I have met a number of these resilient, brave and courageous parents and each one inspires me with their passion and commitment to their child. Their journeys are extraordinary and as a result so are these miraculous children who come through this, like dear Max Page we discussed  last week.

On Thursday, we will meet Lisa Knight, a pediatric nurse who has been working with thousands of these amazing children. Her story and nonprofit will melt your heart. Until then, feel that beating heart of yours, be grateful for your health, all of the love in your life and be sure to share the love wherever you can. The world will be better today because of you.

Charity Matters.

 

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

Copyright © 2018 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.

Max: A Force for Goodness

 

All of you who have been reading Charity Matters for the past few years know that Max Page  and his family have become dear friends to Charity Matters. You may remember Max as Little Darth Vadar of the infamous Super Bowl commercial a few years back or from a number of posts we have done featuring his incredible philanthropic work over the years.

I met Max and the Page family through our mutual work at Childrens Hospital Los Angeles, where Max has spent a lot of time over the years. Max was born with a congenital heart defect and over the course of the last 13 years has had 12 surgeries. This past week Max went through yet another surgery on his heart,his 13th,  to replace a valve that his body has outgrown. Each year over 40,000 are born with congenital heart disease.

His mother Jennifer said, “When Max was an infant, he had an incredible will to live. At age 4, he asked how much surgery would hurt? At 7, he wanted to know why he needed to go through with this and now at 10 he is keenly aware of time and how precious it is.”

Max and his family have used his celebrity and innate goodness as a platform for so many wonderful causes. He is wise beyond his years and he and his brother are two of the most philanthropic young people I have ever had the privilege of knowing, thanks to their inspiring parents.

Max as always uses his experience to make others lives better, even at the tender age of 13. His hope is that if someone is inspired to do something because of his journey, that they would consider supporting a place that has given him so much and become a second home, Children’s Hospital Los Angeles and the Heart Ambassadors program. Max recently said in an interview with Today, “I’m going to do whatever I can to help and do the best to bring awareness to kids like me.”  Max you already have and we are cheering you on during your recovery.

Charity Matters.

 

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

Copyright © 2018 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.

 

 

And the beat goes on….

As Father’s Day is quickly approaching, I begin thinking about my dad. A wonderful man, with a big heart, heart disease and a history of heart problems. My Dad and I still spin together at least twice a week and he will be 78 this fall. However, a few years back, while in spin class my Dad’s heart stopped, while he was on his spin bike. Technically he died. Thankfully, due to the gym’s quick response and having a defibrillator (think the paddles on medical tv shows) close by, his life was saved.

The other day I came across the story of Michael Salem and it reminded me so much of my dad. Mike Salem was also a great guy beloved by all and in 2002 he was playing golf with friends when his heart stopped. Sadly, there was not a defibrillator near by and he did not survive. His company and co-workers wanted to do something in his memory, the result is The Mikey Network. A non-profit whose mission is promote healthy heart living and to provide public access defibrillators, which they call Mikeys.

Since 2003 the Mikey Network has raised millions of dollars, trained thousands on how to use defibrillators, placed hundreds of defibrillators in schools, camps, police cars and in public transit. More importantly than that, they have saved over 15 lives (that they know of) and counting, all because of one man’s legacy.

We never know when our time is up, that is something I have witnessed with both my parents. As a result, everyday when I exit my spin class with my Dad, I say loudly (in front of the entire class), “I love you Dad.” It just takes one moment to change everything….and it is people like Hugh Heron and The Mikey Network who have changed that moment for so many families.

I can no longer take moments for granted….and the beat goes on…

 

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.

Matters of the heart

As  February comes to a close I wanted to make sure that the last post of the month was about the heart. As many of you know I became friends with a wonderful family, the Pages thorough my work at Childrens Hospital Los Angeles. They are an inspirational family and despite the adversity they have faced in light of their son’s congenital heart disease, they always find a way to turn a negative into something positive for someone else.

Some of you may remember Max, as young Darth Vadar in the infamous Volkswagen commercial a few years back. I received an email from Jennifer the other day about a new campaign Max is helping shine some light on, called Mended Little Hearts.

This inspiring organization began in 2004, when four heart patients came together in Boston to discuss their heart surgery experiences.  Out of that meeting came the recognition to support these families of children born with heart defects and heart disease.

 

Today, Mended Little Hearts has over 10,000 members and over 80 Chapters in the U.S. and Mexico. Proof that one heart can heal so many others.

 

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.

 

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.

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.

February is heart month

Today is February 1st and the beginning of heart month. Over the years, I have interviewed a number of non-profit founders who have started incredible organizations to find a cure for congenital heart disease, which is the number one birth defect in the world.

This month, I will share some of those stories with you and re-visit some old Charity Matters friends to update you on their progress. I came across musician and heart transplant recipient, Paul Cardall’s video the other day and thought it sets the stage for this important month.

So, as we begin the month of February, let’s all remember to keep our hearts open to those who suffer with this horrible disease.

 

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.

For Max

For max

As many of you have read here, Max Paige (aka Little Darth Vadar) and his family have become dear friends of Charity Matters. Max was born with a congenital heart defect and over the course of the last 10 years has had 9 surgeries. This week Max will undergo yet another surgery on his heart.

His mother Jennifer said, “When Max was an infant, he had an incredible will to live. At age 4, he asked how much surgery would hurt? At 7, he wanted to know why he needed to go through with this and now at 10 he is keenly aware of time and how precious it is.”

Max and his family have used his celebrity and innate goodness as a platform for so many wonderful causes. He is wise beyond his years and he and his brother are two of the most philanthropic young people I have ever had the privilege of knowing, thanks to their inspiring parents.

This is his theme song for the next leg of his journey and I wanted to share it all with you, in hopes that you can send a prayer or kind thought his way in the next few days and weeks.

Max as always uses his experience to make others lives better, even at the tender age of 10. His hope is that if someone is inspired to do something because of his journey, that they would consider supporting a place that has given him so much and become a second home, Children’s Hospital Los Angeles and the Heart Ambassadors program. Max here is to you and the good fight!

Charity Matters.

Max Page and his Force

max page, the force

As millions of us watched the Super Bowl yesterday and of course those very pricey ads. I thought it might be worth revisiting the one of my favorite philanthropic friends. His name is Max Page and you might remember Max from his starring Super Bowl ad as Darth Vadar, a few years back.

Max has been a patient at Childrens Hospital Los Angeles  many times in his short life for multiple heart surgeries.   I met Max and his family, a few years ago, as we worked together to launch the Junior Ambassador Program at CHLA . The Page family are some of the most philanthropic people I know, and have used their situation and celebrity to the benefit of others time and time again.

Last week Max revisited his friends on the Today Show but didn’t get to share what he is up to these days. Max continues his acting and his passion for philanthropy, At the wise old age of 10 he is a spokesperson for the non-profit GenerationOn.Org which inspires children and teenagers to get involved in making a difference. Max’s heart may have been defected once upon a time, but today it is his heart and use of the Force that continues to inspire us all.

Charity Matters.

 

Copyright © 2015 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.

February is all about heart

pediatric cardioloy

February is a month about love, and the heart. It is a time for cupids, Valentines and a time to talk from the heart and about it. Talking about the heart and from the heart are not always easy. This month, with my Dad’s recent heart troubles, my heart is heavy thinking about families whose children suffer from congenital heart disease or CHD.

It always hard when someone you love is sick but when it is a child the challenge is even greater. I came across this for an upcoming event and thought it shared the parent’s perspective.

Did you know that……

  • Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide
  • About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)
  • Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined.

So when I was told by a friend, whose son suffered from CHD, about Its My Heart, I was determined to share it with you. Its My Heart.Org‘s goal is to provide strength and support for those affected by Congenital Heart Defects.Their goal is to be a resource for families who are not sure where to turn when their child is diagnosed with Congenital Heart Disease. They create networks among families, groups, hospitals, and the community and even provide grief counseling for families in need. Their goal is to make your heart lighter when someone you love is suffering from CHD.

So, as we enter the month of love, from my heart to yours I wish you a very happy and healthy heart month.

Charity Matters.

Copyright © 2014 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.

 

SADS

SADS girlI think I mentioned that heart disease is a very personal cause because it has affected my family for decades. Did I ever mention that my Dad has “died” more than a few times? Well, he has and his last episode was caused by SADS. Thankfully, he is one of the rare lucky survivors due to a defibrillator close by.

A horrible sounding name,  that conjures up unpleasant thoughts. So what is SADS? It is an acronym for  Sudden arrhythmia death syndromes. (SADS) are genetic heart conditions that can cause sudden death in young, apparently healthy people and takes approximately 4,000 young lives annually  These conditions can be treated and deaths can be prevented.

In case your interested here are the warning signs: family history of unexpected, unexplained sudden death under age 40; fainting or seizure during exercise, excitement or startle; consistent or unusual chest pain &/or shortness of breath during exercise. My Dad was on a spin bike when his heart stopped almost 2 years ago.

Until then, I had no idea that since the early 1970’s a doctor named Michael Vincent, in Salt Lake City, Utah was trying to solve this mystery of the heart which takes so many lives.  He began studying the long QT syndrome (LQTS) which is what triggers SADS (don’t dr.s just love acronyms?)

Dr. Vincent and his research team were frustrated by the number of young people with this syndrome who were undiagnosed  and at risk for dying of this disorder. It seemed that doctors were simply not aware of the problem or the ability to test for it.

[youtube=http://www.youtube.com/watch?v=4BhZcYJTJU8]

So in 1988, Dr. Vincent approached his genetics colleagues, and asked if they would be interested in attempting to find the genetic abnormality that leads to SADS. By early 1991, they had located the LQTS gene on chromosome 11.

On December 12, 1991 Dr. Vincent and colleagues established  the SADS foundation a non-profit with the purpose of helping to prevent sudden and unexpected cardiac death in children and in young adults.

Today over twenty years later, their amazing work continues to inform and save lives and there is simply nothing sad about that.

Charity Matters.

Copyright © 2013 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.

Over the rainbow

Tom NilesA friend of mine whose son suffers from a congenital heart defect recently shared this video with me. I thought I would share it with you.

Tom Riles, whose day job is the warm up act for the Ellen Degeneres Show, is the father of a child who was born with a congenital heart defect. He put this piece together with other dads whose children have also have CHD for his web-site, Life of Dad.

[youtube=http://www.youtube.com/watch?v=FP6hIQtD1Mk]

I thought it was the perfect happy way to leave you smiling this friday. A big shout out for the great voices from CHLA. Have a great weekend everyone!

Charity Matters.

Copyright © 2013 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.

Have a heart

heart stetha scopeWell it’s here! February and with that brings much more than chocolates, cupids and Valentines. February is National Heart month. Something I know you all have, a heart that is. I don’t know about your family but heart disease has struck way too close to home in mine.

My father has heart disease and has had multiple surgeries to help that big heart of his, my uncle and my grandfather have all suffered. So this month there is much to do to honor all of those whose hearts are so big that they have created organizations to help those suffering with the silent killer.

I thought to kick off February, sharing this story will both touch your heart and perhaps make you appreciate yours.

[youtube=http://www.youtube.com/watch?v=hbOHP2WRSz0]

We are all so blessed to have such wonderful hearts. Thank you for sharing yours with me today and for always knowing that Charity Matters.

Copyright © 2013 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.