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.
“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.”
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.
“Remember there’s no such thing as a small act of kindness. Every act creates a ripple with no logical end.”
Scott Adams
With Valentines Day on Tuesday, who knew that we had another day to celebrate this week? Today, is National Random Acts of Kindness day…I know, who knew? This is actually such a wonderful way to start the long holiday weekend by doing a random act of kindness for someone. It can be as simple as a smile, putting coins in someone’s parking meter or even giving someone a compliment.
In case you need a few ideas or inspiration there is a non-profit called Random Acts of Kindness Foundation.org that has tips, ideas, lesson plans for simple ways to be kind and here is a video to get you thinking about how you can celebrate today and the act of kindness.
The most beautiful gift you can give is a little piece of yourself to make someone else’s day better. It will make you feel great and create a chain reaction of kindness. Imagine if our world was like this everyday, not just today…
So, here is wishing you a day filled with giving and receiving random acts of kindness. As the quote says, ” Remember there is no such thing as a small act of kindness. Every act creates a ripple with no logical end.”
Since this week’s theme is teamwork, it seemed like the perfect time to share one of the most fun team building activities to hit the philanthropic world in a long time…The Do Good Bus. Last spring, I was at an event for Project Giving Kids and was introduced to this amazing woman named Rebecca Pontius . When I found out what she does, I knew I had to share with each of you…because it is just the coolest most fun thing EVER!
Rebecca is the founder of the non-profit, The Do Good Bus. The Do Good Bus idea came together when Rebecca and her brother were on a party bus for a 30th birthday party. They had friends from everywhere, who didn’t know one another and she and her brother surprised all the guests with the destination of the party last-minute. The party was such a success that Rebecca and her brother had an idea that they could use this same format to connect volunteers and non-profits, making volunteering fun. Their mission was to give people an opportunity to get involved, do good together and learn more about their community.
Here is how it works:
Today, almost six years later, the Do Good Bus has taken over 180 rides with almost 5,000 do gooders to over 109 causes. I asked Rebecca, if she knew when she had made a difference, and her answer was, “Every time you get on the bus and see strangers connecting, rolling up their sleeves to volunteer and do something great for a non-profit in need and then share stories together like old friends..that’s when I know we have made a difference.”
As Helen Keller said, “Alone we can do so little, together we can do so much.”
For all of you that have followed Charity Matters over the past few years, most of you know that I truly enjoy being the storyteller. I am Irish after all, so I guess it comes naturally? However, when the Good News Only site called Hooplaha.com approached me about doing a story on Charity Matters….well, the tables were turned.
The Hooplaha team and I share a common belief that people are innately good and more than that, good news and stories about good people doing great work need to be shared. So with that in mind, if this so inspires you, please feel free to share. The world needs more kindness and goodness, so thanks for spreading some and check out Hooplaha if you need a little happy news to brighten your day.
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.
On a rain soaked day, a couple of weeks ago I met the most remarkable woman for lunch, her name is Katie Quintas. Katie is a living example of C.S. Lewis quote, “Hardships often prepare ordinary people for an extraordinary destiny.” Katie’s hardship re-routed her destiny.
Katie’s life was fantastic. She had a husband, Silvio, she adored. A wonderful son, Bryan and a fantastic career consulting non-profits. Then all of that changed in 2006, when her husband Silvio was diagnosed with leukemia and six months later, her only child Bryan, was diagnosed with Stage Four Non-Hodgkins Lymphoma at age 16.
Katie’s employer was supportive as she tried to manage a full-time job and the two most important people in her life’s cancers. What Katie didn’t realize was how was she going to manage to cook, clean, do laundry, grocery shop, update everyone on Bryan and Silvio’s conditions, deal with the offers for help, all while working and driving between two hospitals over an hour apart from each other? She was overwhelmed, wondered how families manage and didn’t even know where to look for help.
It turns out that she was not alone.
As 2007 came to an end, and both Katie’s husband and son were finishing up their cancer treatments, she began looking for organizations that help families through daily life during an illness, especially the illness of a child. In 2009, when she still hadn’t found an organization that fit the need, she began discussing the idea of creating one with her husband Silvio. With her husband’s encouragement, she did just that launching Here to Serve.org in 2011.
The Quintas family had been through so much but realized that there were so many people who had less. With Silvio’s support Katie set up her non-profit to connect and create online care communities that come in at the beginning of the health crisis to organize, friends, resources, medical information, funding, support all without overwhelming the caregiver, who is typically the parent.
As I sat at lunch and listened to Katie’s story, it was almost too much to process what she had been through but even more to grasp what she does for others. When we both went onto her web-site together and I saw what a care community looked like for a family, it was unbelievable. Once I was part of a sick patients community, I could sign up for everything from walking the dog, bringing a meal, doing laundry, running an errand, donating groceries and the list goes on. The services Here to Serve provides is everything that Katie needed when she went through this and didn’t have.
Sadly, Katie lost her beloved husband to cancer, but she said his memory still keeps her going. Katie told me, “I can’t imagine not doing this. Here to Serve gets me up in the morning, it motivates me and I was created to do this work. This is my purpose.”
This past week, you would have to be hiding under a rock to know there has been a lot of talk about empowerment, but today I would like to share with you an inspiring non-political, good old-fashioned kind of empowerment. It’s the story of a young woman named Veronika Scott, who in 2010 found herself in a college class with an assignment to create a product that would fill a need in her Detroit community. An assignment that would change her life and empower so many more.
Veronika was the daughter of parents who had struggled with addiction and unemployment. So she found herself in a warming center for Detroit’s homeless with an idea to create a coat the could also become a sleeping bag. While she was working on her design, a homeless woman angrily confronted her and said, “We don’t need coats, we need jobs.” It was that moment that Veronika realized she could do both. She said, ” I wanted to create an opportunity, that I wish my parents had when I was a kid.”
In 2012, she created the Detroit based non-profit The Empowerment Plan, to elevate families from the generational cycle of homelessness. Veronika began hiring single parents from the local shelters, trained them as seamstresses to make the coats to meet the needs of the homeless community. More than that, she gave these women a purpose, a job, education, full-time employment and a chance to regain their independence.
Today, Veronika at age 27, has founded the non-profit The Empowerment Plan, employed 39 homeless women and made and distributed over 15,000 coats since 2011. As C.S. Lewis said, “Hardships often prepare ordinary people for an extraordinary destiny.” Veronika is a living example when she said, “No matter what you’ve gone through, you still can do a lot with what you have.”
Each week I meet, interview, and discover the most amazing people, whose stories I share here.
What makes them extraordinary, is what each of them does with the hand they were dealt. The choice that they made to turn something negative into something positive.
The singular thread is that these remarkable people will do anything to ensure that the next person that comes along who is dealt that same hand, now has the resources that they did not.
It is a privilege to get to know these people, to tell their stories and to share them with each of you.
While I know this has been a crazy week with Martin Luther King Jr. Day on Monday and the Presidential Inauguration today….I find my mind somewhere else. Each week I try to find a theme for Charity Matters and Martin Luther King Jr.’s question of,” What are you doing for others?” Thishas become my mantra for the week, that common thread of service.
Really, more than that, I am fascinated with people’s journeys to serve. On Wednesday, it was the story of InsideOUTWriters and Sr. Janet’s program for incarcerated youths in juvenile hall. But what happens when one person’s service inspires another? The goodness is contagious.
That is exactly what happened to Scott Budnick. In 2003, he was asked by a friend to attend a writing workshop through the InsideOUTWriters program. Scott is the infamous producer of The HangOver movies, a Hollywood producer and man who had no idea that his life was about to change. His first trip to juvenile hall, to mentor incarcerated youths, changed everything.
Scott not only committed to mentoring incarcerated youths (which he still does) but he took it so much farther when he realized that these young men and women had a 54% recidivism (going back to jail) rate and decided to do something about it.
He decided to start a non-profit called ARC to change that statistic, one youth at a time by providing the support, mentoring, education, housing, employment and guidance needed to make the transition out of prison a final one.
Today, ARC serves more than 300 formerly incarcerated men and women, who commit to living crime-free, drug-free and gang-free and dedicate themselves to being of service to their community and paying it forward to others in the ARC network.
One man, one moment volunteering and now Scott Budnick is a non-profit founder, who has taken on prison reform, mentored hundreds of young men and women, transformed their lives, the prison system and less than five percent of his kids ever go back. They only go forward passing that torch of service that Sr. Janet ignited in him, to others.
When I heard the words, “It’s never too late to write your own ending.” I knew I needed and wanted to know more about how this phrase came to be, especially from an incarcerated youth in juvenile hall.
Before I can tell that story, I need to share another, and that is the story of Sister Janet Harris. In 1989, Sr. Janet took the role of chaplain at the LA Central Juvenile Hall. A facility that houses anywhere between 1,700 and 600 incarcerated youths. In 1996, a LA Times reporter named Duane Noriyuki came to interview Sr. Janet for a story he was doing. Sr. Janet asked the writer if he could lead some creative writing classes with these kids and that was the beginning of InsideOUTWriters.
Those classes turned into weekly writing classes and in 1999 and IOW officially became a non-profit. Their mission is to reducing the rate recidivism (translation: the tendency for a convicted criminal to re-offend) by providing services, such as creative writing, as a catalyst for personal transformation. Sr. Janet, Duane Noriyuki and a handful of volunteer writers wanted to create an environment of trust and camaraderie where students creativity could flourish regardless of their harsh surroundings.
Today, there are over 42 weekly classes, twenty-seven volunteer teachers, teaching 400 boys and girls the power of writing at over four juvenile detention facilities and the LA County Men’s Central Jail. There is now an alumni program that helps InsideOUT Writer‘s alumni transition as they are released from prison. Since 1996, more than 11, 000 incarcerated youth have participated in over 15, 000 classes.
An InsideOUTWriters alum, Mario Rocha was quoted saying about Sr. Janet, “She is one of the greatest examples of human loyalty and spiritual dedication. For her, religion isn’t something you read, its something you experience by giving your self to the struggle of other people.”
And to end where we began, it is never too late to write your own ending.
With the rain pouring down this past week in LA, I have been thinking about something that has literally NEVER occurred to me…a flood. I know, crazy isn’t it? However, floods are reality in many parts of the country and when a flood or natural disaster strikes, the first concern is safety, housing and food. Once those needs are met victims begin the process of recovering their possessions, most especially trying to find and repair their families photos. This is when Operation Photo Rescue steps in to literally rescue a families memories.
In 2006, photojournalists Dave Ellis and Becky Sell launched Operation Photo Rescue after they witnessed victims throwing out treasured family photos that had been destroyed. Their mission became, “Insurance doesn’t restore memories but we do.”
A few weeks after a natural disaster or flood, OPR‘s team of volunteers set up a location where people can begin to bring in the photos they have found to see if they can be saved and restored. The damaged photos are digitally copied and a host of volunteers from around the globe use Photoshop and give hours of time to restore the images.
Over 12,000 photos have been restored thanks to more than 2,000 volunteers around the world. For many of these volunteers the work behind the scenes becomes personal and being able to give families their memories back is a gift.
It seems fitting to end the week where we began, with Aaron Siskind’s quote, “Photography is a way of feeling, of touching, of loving. What you have caught on film is captured forever…It remembers little things, long after you have forgotten everything.”
On Sunday night I curled up on the sofa for one of my favorite TV nights of the year, to watch The Golden Globes. Unlike the Academy Awards, this show feels like you are at a party you were invited to. So when I saw this story on last night’s news, about the Golden Globes and an amazing non-profit’s photography program, I had to share…. especially since this week was already devoted to photography and how it makes our world better.
In 2008, when Jo Ann Thrailkill and Jeff Castelaz’s son, Pablo, was diagnosed with a rare childhood cancer they wanted three things; to fund research for a cure, to help educate families dealing with cancer and to improve the lives of children living with cancer through the arts. Pablo lost his battle at only six years old but his family was determined to help others and in 2009 began the Pablove Foundation to continue their mission.
So what does this have to do with the Golden Globes you ask? Well, one of their programs is called Pablove’s Shutterbugs and the goal is to give pediatric cancer patients a new perspective through the lens of the camera, in order to learn to express themselves and find a new way of seeing things. Well one of these little shutterbugs was the cutest paparazzi on Sunday’s Red Carpet, take a peek…
Pablo’s legacy lives on in the over 1,000 students who have been reached through Pablo’s Shutterbug program since 2011. The foundation has funded over 19 research institutes worldwide with over 1.9 million dollars given to find a cure. Now that is a picture worth smiling for.
