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.
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.”
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.
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.
The second Sunday in December is an international day of remembrance for children that have died. Every year, in the middle of this crazy hectic season, I curse trying to get to this candle lighting event, I am running on empty and overload, a million lists rushing through my head…..and then I walk into the auditorium…..where I am greeted by hundreds of faces, many who are wearing their deceased child’s image on their t-shirt or clinging to a framed photo, as if it is a life raft…and I pause.
It is then, in this moment, that I know what is truly important. It is here, as I begin to hear one parent share the story of their child’s short journey on this earth and the big impact this small life had on so many, that I know what matters. In this room is full of sniffles, tears and broken hearts the traffic is forgotten, the holiday list vanish and all that remains is love and compassion.
The emotion is palpable and the love and connection these people feel for one another, although strangers, is real. For each of them has walked this path, a hellish journey where they never feel whole again because they have lost a child….their child.
Over 40 years ago, in 1969, a chaplain at the Warwickshire Hospital in England brought together two sets of grieving parents, realizing that the understanding and support they could give one another was greater than he could provide. At that kitchen table the Lawley family, Henderson family and chaplain, Simon Stephens created The Society of Compassionate Friends.
Today, The Compassionate Friends has over 700 chapters nationwide to offer friendship, understanding and hope to bereaved parents, siblings, grandparents and family members when a child has died. There are TCF chapters in more than 30 countries around the world, lead by volunteers who are bereaved parents, siblings and grandparents.
This Sunday, December 11th at 7pm, in time zones across the globe, the world’s largest mass candle lighting event will create a 24 hour wave of light in remembrance of a child gone too soon. I will be lighting a candle for so many, gone too soon and once again be grounded in what it is that truly matters…..love.
There is something magical and cathartic about writing. For me, it is a time to hear my inner voice and explore the outside world, as well as a gift that I cherish. That is why when I heard about 826National.org I was smitten with their mission and story to encourage the gift of writing.
Their story began in 2002, when author Dave Eggers and educator, Ninive Calegari were looking for a solution to help overburdened teachers, while connecting talented working adults and students who needed help. They located a store front in the Mission District of San Francisco, aptly at 826 Valencia Street, where they opened a pirate store in the front and built a writing lab for kids in the back of an old gym space.
Word spread quickly and before long 826 Valencia was serving 6,000 students, between the ages of 6 and 18, annually with over 1,700 volunteers.
Only two years later in 2004 a second chapter of 826NYC, opened in New York City and the following year chapters opened up in Los Angeles, Ann Arbor and Boston. By 2008, 826’s fifth anniversary the non-profit had published its first book with their students work and opened their national headquarters called 826 National with a mission that believes great leaps in learning can happen with individual attention and that strong writing skills are fundamental to future success.
Today, 826 National.Org serves over 30,000 students across the country with over 5,300 volunteers, the organization has been a part of over 886 publishing projects and currently has seven chapters nationwide.
As fall kicks into gear and we all begin to settle into our new school year routines, one thing that I always look forward to is watching my boys participate in sports. There is nothing more fun that sitting with a group of parents who are all cheering their children on.
A few weeks ago, I sat down for lunch with an amazing woman and non-profit founder, named Clare Gurbach. Clare has two daughters that are college athletes and her youngest daughter seems to be following in the family footsteps. We talked about our children, sports and the moment that all of those came together to inspire Clare to help so many children keep playing sports.
Charity Matters: What was the moment you knew you needed to act and start your non-profit?
Clare: “In 2007, I was watching our oldest daughter play volleyball and seeing the disparity in resources between our team and one we were playing. The other team did not have nice uniforms. Some of the girls had masking tape on the back of their shirts for their numbers. Many did not have knee pads or proper shoes. Our team had everything and a professional coach as well. Winning that game 25-2 was not a good outcome for anyone.
We were called to action to “level the playing field” in providing uniforms, sports equipment and resources for under-resourced Catholic schools in the Archdiocese of Los Angeles. We named our non-profit The Saint Sebastian Sports Project after the patron saint of athletes.”
CM: What fuels you to keep doing this work?
“Seeing the huge impact we are having as we have grown. We know that sports help children in so many ways. Beyond the obvious physical benefits of playing sports, children also learn sportsmanship, commitment, and leadership and have fun at the same time. Our students must maintain a minimum GPA to play on their teams so they are incentivized to work hard in school.”
CM: When do you know you have made a difference?
“When we see the smiles on the faces of all the children we serve. When we visit the students at school and bring the schools’ funds and equipment to support their sports programs. When students attend our various tournaments, camps and college visit days at USC and LMU. Many of our students are now trying out for their high school teams that never would have had this opportunity in the past.”
Tell us what your impact been?
“During the 2009-2010 academic year, we were able to support seven sports programs. This academic school year we will assist 39 schools with grants and will serve at least 2,500 students this year.
There are 100 schools in Archdiocese of Los Angeles that need funding. We hope to find more foundation money and person donations to fuel additional growth in the future.”
Ever wonder what happens when you go out to eat and your children leave all their free crayons behind at the restaurant? Well you are not alone, one LA mom did too. Her name is Sheila Michail Morovati and after dinning out weekly at their families favorite restaurant, she noticed all of the unused crayons being left behind. After a little research she learned that there are actually 150 million neglected crayons that get tossed every year in the U.S. Who knew?
Determined to teach her children And so the Crayon Collection was born. Here is how it works: The non-profit organization creates presentations for each restaurant that signs on, gets trained in how to collect the crayons so that they are clean and not soiled, and how to store them. The restaurant is paired with a school about 2-5 miles away and a crayon pick-up is scheduled for about once a month, to get those crayons to the school and in the hands of students who will actually use them.
Believe it or not, they even take those scrappy not so pretty crayons too. “The schools we are serving are so under supplied that even the chalky crayons offer some benefit,” said founder Sheila Morovati.
The goal is simply to reallocate gently used crayons from restaurants, and in the process begin to teach children at a very young age about the needs of other children who can benefit from this simple resource so often taken for granted, teaching the joy of generosity and recycling for a greater good….all while helping another.
Now that seems like the perfect art of childhood….
As thousands of students head back to school in the next few days and weeks ahead, it is time to take a look at what these young brilliant minds have to say about school and learning. More specifically, these wiggly little souls with learning disabilities, who are now facing months of sitting still, (oh the agony ahead of them) after a summer full of playing.
As the mother of children that faced similar challenges, once upon a time. Brilliant and extremely smart, but their brains do not process like the average brain, the following video really spoke to me.
Today, there a so many resources for parents and students with learning disabilities. The most well-known, is The Learning Disabilities Association of America or the LDA, which was founded in 1963 by a group of parents in Chicago that wanted to explore their concern over this growing group of students. By January 1964, these parents had formed a 501c3, non-profit to do just that.
Since that time, a number of significant Federal Legislations were passed because of these passionate parents. Today, hundreds of volunteer leaders across the country continue this important work and LDA‘s national conference draws over 3,000 people committed to the mission of helping those with learning challenges.
On Monday, I shared a guest blog post by Molly Yuska, founder of Project Giving Kids. In it, she reflected on the importance of teaching kindness, not only for the healthy development of our children but for our society and our world at large.
This summer, Project Giving Kids is challenging kids and families everywhere to get in on the action to see just how far and wide the message of kindness can be spread. You too can join the #SummerKindnessChallenge.
Any act of kindness, however big or small, will do. Quick, easy, important and the only way to make our world better, one small act of kindness at a time.
Since Charity Matters just celebrated its 5 year anniversary it seems time for some fresh perspectives. So I have invited our first guest blogger, my friend and non-profit founder, Molly Yuska. Molly is not only a mother but founded Project Giving Kids, a place to empower and teach children about philanthropy.
So, without further ado, here is Molly….
For many of us, the world has started to feel rather scary lately. Almost every week there seems to be a report of some major attack somewhere on our small planet. I can’t help but think how much scarier it must feel to kids who can’t remember a time when the world seemed at peace.
I believe when faced with these kinds of tragedies, we have a choice – to move away in fear and try to hold on even tighter to safeguard our own self-interest in hopes the tighter grip will protect us just a little bit more (or at least make us feel that way) OR to put the fear aside and see it as a call to action, a call to spread kindness and to turn that dark tide back toward the light.
I recently came across an article about kindness and kids. In it, a teacher by the name of Marlem Diaz-Brown states: “I have learned that when you teach kindness and compassion to students and they really understand the concept, everything else falls into place. This should be the first lesson of every teacher.” (Article: http://bit.ly/25IIynS)
Whether the teacher be a parent, an after-school mentor, a grandparent or an actual teacher, I think our children today, perhaps more than any generation that has come before it, need to be reminded of the power of kindness. I want my children to live in a world where they don’t walk the streets in fear of what senseless tragedy may come next. I want them to walk the streets knowing that the power of kindness is stronger than the fear that drives violence. And the sooner we turn them on to their own power to create ripples of kindness, the better off we all will be. After all, kindness is a choice like any other.
I couldn’t have said it better myself! If you want quick and easy project ideas your family can use to begin teaching kindness, visit Project Giving Kids.