This weekend millions of us will watch the Super Bowl and of course those very pricey ads. I thought it might be worth revisiting the one of my favorite philanthropic friends, Max Page. 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. He was born with a congenital heart defect and over the years has had over 13 surgeries. Each year over 40,000 are born with congenital heart disease. Since February is heart month and the Super Bowl, Max has been on my mind.
I met Max and his family when we worked together to launch theJunior Ambassador Program at CHLA . The Page family are some of the most philanthropic people I know. They have used their situation and celebrity to the benefit of others time and time again.
Max continues his acting and his passion for philanthropy. 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 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’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.
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER. If you enjoyed today’s episode, please connect with us:
Some of my earliest memories were the stories my parents told me. My father is Irish and loves to tell a good story. While my mother loved to tell stories of our family’s history and read to us as children. I could never get enough. It wasn’t until years later when I realized that my gift of gab actually was also a gift for storytelling. For the past decade, I have been telling stories to you each week about remarkable humans here at Charity Matters.
So when Professor Biel reached out to me from USC Marshall School and asked me if I would talk to her class about storytelling and nonprofits, I was really excited. I love going back to my alma mater and more than that I love telling stories. Today, rather than a podcast I thought I would share a little about what I shared with the class this past week.
There’s an old American Indian Proverb that says, “Those who tell the stories rule the world”.
I’m excited to talk about the power of storytelling and how we use stories to learn, to connect, and to build relationships and ultimately businesses/nonprofits specifically. If you think about it, one of the first things we learn as children is stories. Our parents read us stories and we watched Disney stories in movies. Stories are part of who we are and where we came from. There is a story in all of us.
The best stories are true, they have a beginning, a middle usually with a conflict, and an ending we hope with a happy resolution.
So rather than introduce myself properly, I’d like to tell you a story….my story. the one that changed my life from having a career in the software business to becoming a nonprofit founder, a storyteller, and a person on a mission to make the world better one story at a time.
Spiritual Care Guild
We tell stories get volunteers, communicate our vision, connect a community, to raise money…because in the nonprofit world the product that we sell is humanity….and we don’t sell, we tell…stories. Stories of those we serve. The stories are the connective tissue for our organization. They are the threads that connect our quilt and in this case, the quilt is a nonprofit. To sell your vision you have to tell the story.
Neurologists have studied storytelling and there are three main things that happen to our brains when we hear stories like the one I just told you
We remember, our neural activity increases fivefold
Stories generate empathy, like the empathy we just had for the girl with her pink blanket because our brains generate more oxytocin, (OXY-TOE-SIN) which predicts how much empathy we have.
Stories bring us together- we all collectively felt that compassion for that family, the empathy, which is why we watch movies on dates. We just all shared an experience and felt like we were in that room with the little girl.
After a few years of working with an incredible group of volunteers to launch the Spiritual Care Guild, I began to wonder who were these other people who started nonprofits and why? What was their story? At the time there wasn’t People Magazine Heroes Among Us or CNN Heroes or Upworthy…I realized there were 1.5 million nonprofits in the US and I wanted to know who started them and why? So I decided to find these nonprofit founders and tell their stories.
Charity Matters
I realized that if I can help the helpers I could help the most people. My impact and my skills as a storyteller would do the most good. I also quickly realized that all of these nonprofit founders had the makings for a great story. They had a conflict; a struggle, an obstacle, and that they had overcome their adversity and used it to help others, the happy ending….which was the perfect recipe for great stories. Nonprofit founders wanted to tell the stories of their work and not necessarily their own which was often the most powerful story of all. I am still telling these stories and fascinated by them each week. These are my people, people who have given their lives to serve. They are true leaders.
This leads me to a key component of any business/nonprofit and that is leadership.
TACSC
In 2013, I took over a 32-year-old nonprofit in need of some updating. Their messaging and stories didn’t exist but what they did (and did well) teaching leadership did exist. So we started by defining the work TACSC does and sharing that message…in order to lead you to need to:
Have a vision, a plan
Be able to communicate that plan
Be a lifelong mentor
You can not lead unless you serve
We began with that message and went in search of stories from our alumni and then found stories from those students we were serving, what was their story? Those stories took TACSC from serving 300 children a year to 3,000 with only 2.5 employees. That is the power of a story and a message. Each of these stories built and rebuilt three brands. Two of which are nonprofits, Spiritual Care, Charity Matters, and TACSC. They all started with a vision, then a story to communicate that vision, each organization brings along mentors and all three based on serving others. Leadership and nonprofits follow the same path.
Remember the power that stories have to connect us, build relationships, and command the most influence in your community, nonprofit, or business. So if you do one thing with all of this …..think of what your story will be? How will you use your gifts to serve others?
Make your life a story worth telling!
CHARITY MATTERS.
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
In full disclosure, there is nothing more fun than talking to your friends about their nonprofit work. Especially when their work involves creating magic for very sick kids with extreme hospital room makeovers. Think of your favorite HGTV show with the recipient being a sick child and the makeover being a hospital room. Many of you may remember the incredible story of the nonprofit Once Upon a Roomthat I shared a few years back?
Ford and Heidi Johnson, Jennifer Hull, daughter Josie and Sienna Dancsecs
Join us today for a fantastic conversation with the three Once Upon Roomfounders; Jenny Hull, her daughter Josie Hull and Josie’s best friend Sienna Dancsecs. Where we will learn about Jenny Hull’s incredible journey from being a celebrity assistant to an adoptive mother and nonprofit founder. These three remarkable humans will inspire you with their friendship, love, and beautiful work helping thousands of children and families each year.
Here are a few highlights from our conversation:
Charity Matters: Can you share Your journey with Josie prior to beginning Once Upon a Room?
Jenny Hull: I was with an amazing family in Malibu that I worked for and they were very involved in an organization called Healing the Children. Subsequently, I became involved with them too. What we did there was bring kids here to the United States for surgeries, and then we’d send them back home after they were healed. Long story short, we got this request for these two adorable high conjoined twin little girls.
It was kind of our mission to bring these babies( Josie and Teresa) here to America and they were conjoined at the head. They were separated at UCLA Medical Center and had a 23-hour surgery. Our girls were the first successful girls to be separated successfully. Long story short, I am now the very, very proud adoptive mother of Josie, one of the twins. Josie’s other twin is with another amazing family in Valencia and we’re really close together. The birth parents are really the heroes in the story, selflessly allowing their children to be in America because that’s the only way they would have survived. They really are the unsung heroes in this, we are so grateful to them.
Charity Matters: What was the moment you knew you needed to act and start Once Upon a Room?
Jenny Hull: We spent we have spent over the years, I can’t even count the number of days and surgeries there have been too many! We did we personalized Josie’s room every single time. Everybody would walk in with and they would look at it and say, “Oh my gosh Josie you love pink!” Then they would recognize her as a person instead of her what she was in there for and it really touched our hearts.
We realized it was especially important in a teaching hospital when you have so many new residents, for them to recognize the person is so important. So at 11 years old, we were laying in bed one night and I vividly remember this and Josie leaned over and says, “Mom, I really really need to be doing something for someone else. I want to help other kids in the hospital.” I said, “That’s a great idea!” We called Sienna who was the same age, 11 years old, and told her the idea. Sienna said, “Let’s go in and decorate these hospital rooms.” Then Sienna came up with the name.
Charity Matters: What are your biggest challenges?
Jenny Hull:Definitely fundraising is a big challenge. In all honesty, we thought when we started we’ll do 50 rooms a year at CHLA. Period. We thought this is great and it’s something that will inspire the girls and they can inspire other people. We didn’t think much of it and we ended up doing 102 or 105 rooms our first year. Our town is so supportive, and they really rallied behind what we were doing and really supported the effort and we were so grateful for that.
Then we started expanding, all of a sudden, it was like the universe opened. It’s really kind of because the girls took this on. People see the greatness and what it does for the hospital’s families and especially patients.
Charity Matters: What fuels you to keep doing this work?
Jenny Hull: What really keeps me going is these two amazing faces next to me. Literally, there are times that I don’t think I can do this anymore. I’m exhausted and fundraising is so hard. We just want to change the lives of these families and these patients so much. Every room is our heart and soul goes into.
Before COVID, we were at anywhere between 40 and 70 rooms a week. There’ll be nights I’m like, we’re done and then I look at Josie and Sienna. It’s their dream, journey, and vision. I feel like I cannot let down for a second if we just need to keep going.
Charity Matters: Tell us what success you have had and the impact of Once Upon a Room?
Sienna Dancsecs: In terms of impact, we started in one hospital at CHLA in Southern California. Since we began we’re now in 12 hospitals across the country. We have had three new people and new states and new hospitals reach out in the past five days, about opening. It continues to grow, we’ve done over 4000 rooms.
I also think one of the things when it comes to impact is the impact we have on the kids and their families with their hospitals days and medical journeys. More than that we have such an impact on the volunteers, the hospital staff, and our donors. I have had friends that have come to the hospital to volunteer, in high school and college, not knowing what they want to do when they grow up and leave saying, “Oh, I know, I want to be a nurse or I want to be a child by specialists.” One volunteer is now working in the foster care system because she met people through her work with us at the hospital. So I think it’s everybody around that really is affected by it, not just the patient or family. It’s everybody involved.
Charity Matters: How has this journey changed you?
Jenny Hull: I’ve definitely learned so much about human compassion. To walk into rooms and the life lessons that we’ve just learned from our patients. Watching their journeys being able to sympathize and empathize with what they’re going through and just to look at the world with such love, and try to figure it out. There are people you walk by every single day that you just know are fighting some battle. It’s how to appreciate the people you are asked to be with on a daily basis. The greatest gift I’ve been blessed with of all the people we’ve been surrounded with, Josie and Sienna. Literally, truly the best gift we could have ever asked for. So, gosh, I’ve learned so much and I’m so incredibly grateful that we’ve been led down this road. You know, we didn’t we didn’t pick it. It picked us.
Charity Matters: What life lessons have you learned from this experience?
Sienna Dancsecs: I learned a lot about the business of nonprofits and how all these things work. Walking into kids’ rooms, every day who were super sick, or they were at the end of life made me realize how lucky I am just to be healthy. I think it’s something that we all take for granted. So that’s something that I quickly learned, talking to these kids, watching them fight for their lives, watching them lose their battles to cancer, it was really hard to watch. But it made me so grateful for everything that I have.
It also taught me from a young age, how important it is to give back and to help other people. I feel like it’s a really great gift that I got from Jenny and Josie that I learned that this was something that made me feel so good and made me feel like I was doing something to help other people. And it’s something that I continue to do. I know, I’ll take it with me wherever I go. Prioritizing, helping other people giving back, brightening somebody’s day, even if it’s something small. You never know what kind of difference that you can make.
CHARITY MATTERS.
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So often in my life, multiple people point me in a singular direction and if I pay close enough attention I get the clue. A girlfriend of mine has been telling me about My Friend’s Place, a youth homeless organization, for years. A girl I work out with at the gym and her husband are very involved and have mentioned My Friend’s Place to me a number of times. Then over the holidays, I met a board member from My Friend’s Place who introduced me recently to the lovely Executive Director, Heather Carmichael. We finally connected and I am so thrilled we did. Heather’s insight and perspective on what is happening to these young people who are experiencing homelessness was so insightful and inspiring. I hope you enjoy our conversation as much as I did.
Charity Matters: Tell us a little about what My Friend’s Place does?
Heather Carmichael: My Friend’s Place is a 32-year-old organization that is a change maker in young people’s lives who are in the throes of experiencing homelessness. We are about creating a connection so that young people might begin to trust this community of support. We are a safe place to be in their crisis and a place that can help them stay connected to themselves, who they are and who they want to be in their future.
We want them to see that their current situation is hopefully circumstantial and that when their homelessness comes to an end that they are still who they are and want to be. If these young people can survive the trauma, make meaning and find opportunity then what they can contribute to our community is profound.
We try to help these young people to craft a whole identity. Developmentally, at 18 they have little or no training, minimum wage jobs do not resolve their problems. Living on the streets can be a very hostile experience trying to navigate life at age 18, 20, or 24. We do everything that a family or a friend would do to support someone at that age to find their way.
My Friend’s Place Founder Steve LePore and Executive Director, Heather Carmichael
Charity Matters: Tell us about how My Friend’s Place started?
Heather Carmichael: In 1988 Steve LePore and Craig Scholz saw a rise in youth homelessness in Hollywood. The draw of Hollywood and the entertainment business has always made Hollywood a lure for many. In the mid-1980s Steve and Craig started to address the issue with a very grassroots organization originally called The Lighthouse.
They were scrappy opening up the back of their trunk to give kids something to eat, someone to relate to and listen to them and then eventually a place to stay. Hunger was one of the main issues then. Today we have taken the work that they began and expanded to a staff of thirty that provides legal aid, mental health, a host of outreach programs to create a one-stop community center.
We now serve 1400 youth a year with about seventy-five to eighty coming in each day to eat, rest, shower, receive clothing and programming. We address both the immediate crisis and their long term goals and needs. Doing what any family would do for one of their children who was trying to get on their feet. We want to help these young people with their pain and find their potential of who they can be.
Charity Matters: How did you get involved with Mt Friend’s Place?
Heather Carmichael:I arrived at My Friend’s Place over twenty years ago, in the mid-1990s. I was working with youth runaways in San Francisco and doing a suicide assessment of programs with Children’s Hospital Los Angeles and saw first hand the work that was being done for youth homeless and how young people responded to different environments. An opportunity surfaced when Steve LePore stepped away and a Clinical Director position opened up at My Friend’s Place in 2000 and I came on board and have been here ever since. I knew that I loved the way that My Friend’s Place engaged with the young people but what I didn’t understand was that this would become a place where who I am as a human being would match my professionalism in such a deep way.
Charity Matters: What are your biggest challenges?
Heather Carmichael: There are so many. The landscape around addressing homelessness is under such dynamic change. For years, no one spoke about homelessness and now we have an epidemic crisis. Communities are overwhelmed and LA is in such pain about this. How do we continue to engage communities in meaningful ways so that we maintain momentum towards a solution?
I feel very grateful to be doing the work at My Friend’s Place, where our main priority is to resolve these young people’s homelessness while continuing to create meaningful opportunities to see the impact and to feel involved. How do we scale to that in a meaningful way? A multitude of things got us here and it will take a multitude of things to fix this. We need to create meaningful opportunities to get our community and supporters involved in understanding and being a part of the solution.
There needs to be advocacy to ensure that these young people are not lumped in with adults. How these young people entered into this horrific situation is hopefully just a moment in time and very different for each person. We have folks with jobs and young intact families but with rent increases can no longer afford a place to live, if you can re-stabilize a family like that they will probably be able to continue on with a healthy stable life. Then you have folks with mental health issues and the intervention is different than with that intact family. Then you have someone experiencing domestic violence and that intervention is different. The Foster Care kids come out ill-prepared for adulthood without family, or any community support to manage their transition into stable adulthood. There are so many issues and what is the right intervention for one person is always different. for another. We really have to be thoughtful about what is the right way to support and help these individuals for their particular crisis and not approach this only as a housing crisis.
Charity Matters: What fuels you to keep doing this work?
Heather Carmichael: I think understanding that I can be a part of a community that can create connection and opportunity that can be a game-changer for one young person, a hundred or thousands…it just blows my mind. To be a part of that moment in time when a young person makes a connection. It is like watching your child take their first steps and watching that is what it feels like. The only difference is bringing the community in to watch it and to be a part of it.
Charity Matters: When do you know you have made a difference?
Heather Carmichael: My primary interaction with our young people is my foundation for this work. I yearn for this work but now I feel that my role is to bring the community in to witness the work we are doing. Recently we had a young woman, in her early twenties, who was in great distress. To be there to witness, the vulnerability, to hold the pain and the possibility of something different. This is really about being a part of a community, keeping us connected to beholding one another. I think this is a role that both faith-based communities and nonprofits share, keeping us connected and beholding one another.
Charity Matters: Tell us what success you have had and What has your impact been?
Heather Carmichael: The 1400 youth who come to My Friend’s Place each year are impacted by feeling safe, cared for and by the opportunity to partner with us to change their lives. The thousands of people who come to be a part of a transformational community. Both are super valuable impacts. We are all the same in our desire to feel whole and to contribute. Every day we work to make the ordinary extraordinary.
Charity Matters: What life lessons have you learned from this experience?
Heather Carmichael: I have had to challenge myself to be seen, to step on stage, to walk that carpet, that goes on the radio or television and to develop an extroverted part of myself. That being seen does not drive me but I have learned to express my love and confidence in what happens at My Friend’s Place. Our mission and our youth. fuel me but being out front does not, I want the spotlight on this mission.
How has this journey changed you?
Heather Carmichael: I am so steeped in this work. Who I am as a person is who I am in all parts of my life. I feel very grateful to be where I am so I can be who I am. My intention was never to be the Executive Director and I stepped into this role with great hesitation but my love for these young people won.
Charity Matters: If you could dream any dream for My Friend’s Place, what would that be?
Heather Carmichael: My dream for My Friend’s Place is to be resourced in order to resource the staff and to swiftly resolve the crisis of youth homelessness. My dream for our young people is to achieve their dreams.
CHARITY MATTERS.
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
Like all good fairy tales, it begins with once upon a time…there was a beautiful woman named Jennifer Hull and her heart was so huge that she not only adopted one child but created a non-profit to help hundreds more sick children at children’s hospitals around Los Angeles. Jennifer and I have known each other for a while and a few years back I interviewed her about their incredible cause called Once Upon a Room. A non-profit organization that decorates rooms for children who have long stays in the hospital.
Since that time, Jenny’s daughter Josie, Josie’s best friend Sienna, my son and host of amazing high school students have brightened hundreds of children’s hospital rooms with their work. Now that my son is heading to college in Texas he and his buddies are bringing Once Upon a Room to their local Children’s hospital. This week I thought I would share the magical fairy tale once again…because like all good fairy tales we want to read them over and over.
Charity Matters: Give us a little back round on you and Josie?
Jennifer Hull: A little history about Josie and I…I am the very proud, adoptive mother of Josie. Josie and her sister, Teresa, were born in Guatemala and were conjoined at the head. They came to the US at 9 months old. At 1 year old they underwent surgery done by a 50 person medical team to separate them. After 23 hours in the operating room, our two beautiful girls were rolled out in 2 separate beds.
We were granted a miracle that day and have spent every day since trying to do everything in our power to better the girls’ lives and those around us. As one can imagine our medical journey did not end at separation surgery. There have been countless hospital stays with over 30 surgeries combined and hours upon hours of physical therapy.
We know from first-hand experience when you are in an environment that makes you happy and calm healing is easier to achieve. It was important to Josie and me to help others in medical situations feel better. The main portion of our program is to decorate hospital rooms for pediatric patients going through active medical treatment.
Charity Matters: What was the moment you knew you needed to act and start your non-profit?
Jennifer Hull: Once Upon a Room has a tag line…Every child has a story. My sweet daughter, Josie spends so much time in the hospital. Every time we are inpatient, I noticed her spirits were lifted when we would bring in items that were ours and set up a mini “house” like atmosphere. We have had the pleasure of meeting other patients and families over the years and when we would visit them we would bring something to brighten their room we could see the joyous effect it had.
We wanted to expand our reach and really transform the hospital setting into a personalized, happy environment. Josie and I got excited about the possibility of spreading joy to others in the hospital. We knew we needed to do this. We wanted to serve others and this was such a perfect fit for us.
Sienna, Josie and Ford
Charity Matters: Who along the way has helped you make this journey happen?
Jennifer Hull: Siena Dancsecs is a huge contributor to our success and is one of Josie’s best friends and has been through so many ups and downs with Josie medically. Siena’s passion to help others started to light on fire. At 11 years old she called to tell me that the organization should be named Once Upon a Room. She said that our mission should be to serve pediatric patients in and out of the hospital that was inactive medical treatment.
Siena says, “Through my friendship with Josie I wanted to do more. We do what we do because we can see the long-term impact it makes. I remember getting asked to go to the hospital for the first time. I honestly had no idea what to expect, what I would see or what I would hear. Normally when I think about a hospital I think about all of the needles, medicine and doctors. We get to see a different side of it. When we walk into those rooms we get to brighten this patient’s room with what they like. It becomes all about them in a different way. It’s not all about their disease or injury; it’s about them as a person. That’s what makes it so special. Getting to make these patient’s days just a little bit brighter. And truly it affects not only their environment but also everyone around them. It brings this glow to their surroundings, helping them start fighting a little harder.”
Charity Matters: What fuels you to keep doing this work?
Jennifer Hull: This is an easy question…making other people happy!! As Josie says, “We do this to make other kids happy. I know how hard it is to be in the hospital so I want to help them too.”
We can’t change the medical outcome but we can change how they feel when they are going through this journey. You can’t believe how rewarding it feels to know that you put your heart and soul into doing something for someone else that hopefully makes a difference in his or her life. Every room we do we put ourselves into their shoes for a moment. We do our best to anticipate what they would want or what would bring joy to them.
When we get the theme of the room we try to do the best we can to make it perfect for them. You would think after doing over 500 plus rooms it would be redundant but instead, we try to make each room better and more personalized. Making someone else happy fuels us. Hopefully, that person is the patient, but also the family. Being in the hospital is so stressful for the whole family.
We are one of the few people who walk into the room and can concentrate on the person, not the medical diagnosis. We get to recognize them and their interests. The family gets to be reminded of theperson, not the condition.
The other part that fuels us is the excitement that it brings to the medical staff. You almost see them invigorated. It is so much fun to watch them and their reactions when they are watching a room reveal for one of their patients that they clearly have compassion for. It is a gift to us to make others feel special.
Charity Matters: When do you know you have made a difference?
Jennifer Hull: There is an interesting thing that happens in our group. It isn’t only the patients and families that we affect. Many times it is the volunteers or vendors that we see affected by our work. It is so much fun to go into Target and the cashiers are all excited to see what rooms we are shopping for. It is so rewarding to see the change in our volunteers when they come to help.
Witnessing the love and compassion that kids and teens give to patients is one of the best gifts in my life. We don’t give them enough freedom or opportunities to give to others in a meaningful way. Giving them a positive experience serving others at a young age while hopefully help them remember that feeling when they are adults and they will find a cause that they can make an impact giving to as adults.
Charity Matters: Last question before we end this fairy tale, tell us what success you have had?
Jennifer Hull: Our success isn’t measurable. Success for us is determined by the about of love and compassion we are able to spread to our patients, families, staff, volunteers, and vendors. It is the ability to spread hope and happiness. Our success is based on helping and serving others.
Now that is happily ever after….if ever I have heard one.
“The key to realizing a dream is to focus not on success but significance, and then even the small steps and little victories along your path will take on greater meaning.”
Oprah Winfrey
We never really know where life is going to take us, it is a journey and a process. The beauty of writing is that I can stop along the way and reflect at moments that lead me to this one right now. As we all know, life is about the people we meet along our path and the moments that we share together. When you walk far enough down your path you can begin to see that life’s greatest challenges were the road signs that redirected your course. Those roadblocks are actually road signs screaming, “Stop danger ahead, you must make a drastic turn, now!” Of course when we start our journey’s we are convinced that those roadblocks are the end of the path and our world in that moment. The farther we move ahead, the clearer that obstacle becomes the gift that it is.
When my mom died suddenly in 2002, and my father came very close to death it was a roadblock of epic proportions. That roadblock led a group of us to start a nonprofit providing chaplains of all faiths at Children’s Hospital Los Angeles. The experience of starting and running an organization that asks for money to survive had me questioning who are these modern-day heroes? All 1.7 million of them! And what the heck happened to them to make them want to do this crazy difficult humanitarian work?
That question burned in my mind and honestly still does today. I sent out on a quest in 2011 to find them, modern-day heroes. I needed to know who these people were, what happened to them and why they do this incredibly hard work every day? To say I was and am obsessed would be an understatement. That quest and question lead me to start Charity Matters, which today celebrates its 8th birthday, the same birthday as my moms.
Next week Charity Matters will celebrate its 1,000th post, so hard to believe? This journey has brought some of the most fascinating people into my life who have taught me so much about empathy, kindness, perseverance, purpose, faith, love and friendship. So many of the people I have interviewed have become friends along the way. My life is so much richer than I could have ever expected from the roadblocks and the sharp turns that continue to shape this path.
So, thank you for being a part of this with me. I write this because I am looking for goodness and each week that you read this, you are too. I believe that people are good and that we are all looking for examples. So thank you for validating this quest, for being a part of my journey and for knowing that….
Charity Matters
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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.
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.
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Many of you may have seen this piece when it was published earlier this year by Thrive Global, who I wrote it for. However, this week as we celebrate Christmas it seemed the right time to revisit or reshare with all of you. This is probably one of the most personal stories I have done in the past five years but it also highlights the journey that has lead me to this place….and a reminder of why we celebrate Christmas.
I was recently asked about when my faith or spirituality began. I knew the answer but growing up being told to never discuss religion or politics, I was initially unsure how to respond. I have never publicly shared this story but once asked I felt compelled to share, because I am proud of this journey.
I grew up in a big Catholic family, maybe an oxymoron, but a fact nonetheless. That meant mass on Sundays, prayers at dinner and a Catholic education, Kindergarten through high school. All of these rituals became the building blocks for my faith. Like most religions in the world, the blocks that were presented to me were love one another, trust God, people are good, help one another, and believe in something bigger than yourself.
I thought I had a relationship with God, but honestly I didn’t truly know what that was until the fateful call in the middle of the night that truly changed the course of my life, fifteen years ago. My parents and their friends had been in a horrible car accident. My mom was dead, two of my parents friend were also dead and my dad and his best friend were barely hanging on.
That was when my relationship with God truly began. I prayed, begged, and pleaded with God to not make me an orphan and to save my Dad’s life. A man who has incredible faith. God listened and while my Dad had a long road, he survived and eventually thrived.
Unbeknownst to me, my mom had bought raffle tickets before her untimely death, and a few months after she was gone we received a call that we had won a first class cruise anywhere in the world. I was sure it was a sign but wasn’t sure what it meant? My husband and I picked a Mediterranean cruise, that had a list of places I had visited with my parents over the years. My hope was that somehow, on one of these stops, God, my mom or something would come to me and make sense of the insanity of my loss and overwhelming grief.
City after city on our stop, nothing. No signs from above in Paris, Florence, Venice or Rome. Finally one stop from our final destination, I had given up. We arrived in a place called Ephesus, Turkey. Because we had no idea what to expect in Ephesus we went with a guide through the ancient city.
You might have thought going to church every weekend of my life I would have recalled the Bible readings of St. John to the Ephesians or have known that when Jesus was dying on the cross he is believed to have asked John the Baptist to get his mother to Ephesus to keep her safe. Nope, I was clueless. We listened as our guide wove the history of Christianity, Judaism and the Muslim faiths into a beautiful tapestry that if all could hear, there would not be any religious wars. He was mesmerizing.
Then he took us up a hill to Mary’s house. Yes, THE Virgin Mary’s house. Really? How did I not know about this? The Pope had recently made it an officially site of pilgrimage. I stood in front of Mary’s little brick house, smiled for a picture not knowing what was about to happen. I walked into the darkened tiny room with a stone floor and was struck by the most overwhelming feeling. Tears streamed down my face, I could not speak (which lasted over 2 hours) and the emotions where so overwhelming, unexpected and powerful. Love is the only word that would explain how I felt, overwhelmingly loved.
Was it my mom? God? Mary? I didn’t and still do not know. My husband asked me if I wanted holy water, I nodded yes. He asked if I wanted to write on the wishing wall, I nodded yes. He asked me if this is why we won the tickets for the cruise? Tears streamed down my face like a faucet, as I nodded yes. I knew for some unexplainable reason that I was supposed to be there in that moment. A girl from LA with three small sons halfway across the globe and I was meant to be in Ephesus, my mom had brought me here for a reason.
That moment changed my life and I now know there is a power in the universe greater than us all. Whether you call it God, Mary, love, light, spirit…. it doesn’t matter but I know and believe it is real. Since that day almost fifteen years ago, I have used my life to serve others. I believe in the plan that has been set for me. A year after that trip, a group of us started a nonprofit to provide chaplains of all faiths at Childrens Hospital Los Angeles. Since that time, in all my work with nonprofits, I am privileged to see and feel that same goodness over and over. As they say, “Faith is seeing light with your heart, when all your eyes see are darkness.”
Charity Matters.
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“Striving to be of service is not only a noble thing to do, it’s the best way to lead a truly fulfilling and significant life.”
Michael Josephson
The other day, a friend of mine who started a non-profit called Once Upon A Room.Org and I met for a quick catch up. I told her that I really wanted to interview her for Charity Matters and she said, “Don’t interview me, come and join me….and bring your son.”
I came home, thrilled about the invitation, my 16-year-old son….well, not so much. I heard a variety of excuses, his summer job, things he needed to do, etc….however, I persisted. Without having a full spoiler alert (the story is coming next week) he relented, as you can see from the photo above.
He was late for his job, his first job ever, and very stressed when he left our work at Children’s Hospital Los Angeles. Our service had made him much later than I had told him. I love serving others and this experience was magical and yet, I felt guilty that he was late for work and thought that perhaps….maybe…just maybe, service isn’t for everyone and had I pushed too hard?
It was about an hour into his job, that I received a text. It said, “Thank you Mom. Today was so much more than I expected. Even though I was late for work, it was worth it. I had fun and thank you for bringing me with you.”
His text said it all. Leading a significant life is not about looking at the mirror, it is about turning the gaze in another direction. Service heals us all, only if we let it.
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.
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.
I think by now most of you know that I am a huge fan of Childrens Hospital Los Angeles. Over the years my involvement has expanded to a number of different projects, but one that I am so proud of is the Junior Ambassador Program.
A few years back, when touring the new hospital space, a handful of us began a conversation about the need to get our children involved with supporting the hospital. That conversation was the beginning of Junior Ambassadors Program, a place where children use their talents to help others. Some children sell their artwork or photography. Some students throw parties, our son threw touchdowns for sponsorship and raised thousands of dollars for the hospital, simply using his skills to help another.
A recent catch up with a friend from CHLA, proudly shared how the program has grown from a handful of ambassadors to hundreds and while these ambassadors may come in small packages, their work is mighty.
This year the Junior Ambassador will raise hundreds of thousands of dollars for Childrens Hospital Los Angels. Children helping children, there is simply nothing better.
We all dream. Sometimes we don’t remember them, sometimes we wake up feeling like we are falling and sometimes we just dream big. But it is those moments when we are awake and realize that our dream is real and really happening…well there just are not words to describe.
That is exactly what happened last friday at Childrens Hospital Los Angeles. The dream became real, not only for me, but for thousands of patients and families that will now have a place to go, to think, to pray, to meditate or just to be. Over twelve years ago we set out to build a non-profit to provide chaplains of ALL faiths 24 hours a day 7 days a week at CHLA, and we did it!
Then once the hospital had chaplains, we realized they didn’t have a chapel that could accommodate more than one person at a time. So a journey began to create a beautiful space where people of all faiths or none at all, could come and be. Patients, families, doctors, nurses, a place for all.
Last Friday morning, as I watched civic and religious leaders from all over Los Angeles, open and bless the new InterFaith Center at Childrens Hospital, I knew the dream was real. It took a village and years to make it happen, but it did. Standing there in that moment, my heart filled with pride in being a tiny part of this incredible legacy of compassion.
I was reminded that dreams do come true, especially when you dream big.
