On the heels of last week’s post about Once Upon a Room, a friend and follower of Charity Matters reached out to share this amazing story with me about a Southern California girl named Claire Wineland. Claire was born with Cystic Fibrosis, a disease that creates an overabundance of mucus and ultimately results in respiratory failure. She grew up knowing that she is terminally ill and what we would think of as tragic, she simply uses as fuel. Her message and life are truly remarkable.
Claire has endured over 30 surgeries in her short 20 years and has spent an incredible amount of time in the hospital. About six years ago, after being in a coma for over 20 days, flat-lining twice and being given a less than 1% of survival, Claire survived. She came out of the experience determined to help others with Cystic Fibrosis. From that near death experience began the creation of the Claire’s Place Foundation,whose mission is to relieve families financially with CF, to help with their rent, mortgage, car payments, etc.
The foundation became a way to celebrate Claire’s life. She recently said,”It is important for people who are sick to feel empowered. It gives them a reason to take care of themselves.” And if that wasn’t enough, Claire decided shortly after in high school to begin a YouTube series called The Clarity Project, where she talks about topics such as how to talk to a sick person or even what it is like to live like you are dying.
Claire recently moved out on her own, decided not to go to college because she is not sure she will live long enough to graduate. She is spending her time sharing her inspirational message doing Ted talks, running her foundation and recently partnered with Zappos to take on project similar to Once Upon a Room with children’s hospitals in Las Vegas.
I do know how precious and unexpected life can be but Claire’s message is a reminder to us all. If you give yourself one gift today, listen to Claire’s talk (above) at a recent Zappos event. She is a reminder to each of us how precious life is, how blessed we are to have our health and regardless of our circumstances, that someone always has less than we do. Claire’s life is an example to each of us, that we not only have the power to help…. but more than that….. to live our lives fully.
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 number of years, and last week we not only sat down together to catch up, but my son and I were invited to help Jennifer, her daughter Josie, and best friend Sienna, with their incredible cause called Once Upon a Room. A non-profit organization that decorates rooms for children who have long stays in the hospital.
Rather than me continuing this fairy tale, I think the conversation tells this story the best.
Charity Matters: Give us a little back round on you and Josie?
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 years 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 everyday 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 I 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.
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 we 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 were in active 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 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 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.
“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.”
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.
“The world needs new leadership, but the new leadership is about working together.”
This past weekend was the last day of camp. I sat in the front row like a proud mother listening to 175 children that were not truly my own, talking about love and kindness and acceptance. Never have I been more proud. The lessons these 6th, 7th and 8th graders taught every parent in the room about their experience at camp were awe-inspiring. If ever this message was needed…it is now.
I am privileged to serve over 3,000 students a year, as the Executive Director of a non-profit leadership organization, which also runs a summer program. We have two full-time employees and hundreds of high school and college students volunteering that serve as camp counselors and mentors. Students teaching students, to listen to one another, to respect and learn from different opinions and how to work together towards resolution. Ultimately teaching them how to lead.
Every night as I watch the news and see the continuing political discord rearing its ugly head, I can’t help believe that our children will be better than we were, they will learn, listen, come together to lead us all. These children are our hope…just as one of our students said, “It is an eyeopener to learn that you can do something to change the world…”
Regardless of where you live, you have witnessed homelessness. It seems to be an epidemic on the rise and a problem with so many layers, that many of us simply don’t even know where to begin? In communities across the country people are coming together, as Americans do, to roll up their sleeves to support those in need.
Last week a dear friend of mine, reached out to tell me about his amazing aunt, Norah Miller, and the work she is doing in her community to help the homeless. Norah lives in Pennsylvania where the economy has struggled, the opioid addition has skyrocketed and Veterans are unemployed and facing homelessness. It would be easy to turn a blind eye, but Norah simply couldn’t look away. Instead she decided to act.
In 2009, Norah and four friends came together to do something and founded Cornerstone, to support the homeless in their community and by 2016 these five received their official nonprofit status.
Here is what Norah had to say last week:
CM: What was the moment you knew you needed to act and start your non-profit?
Norah Miller: It was a bitter cold morning in western Pennsylvania, January 2012, when a young man called me. He identified himself as a veteran who had lost his job and his home in Akron and was doing temp work at a steel mill. His take-home pay wasn’t able to cover the $40 a night charged by the motel. When he called me, he didn’t have enough money for gas to get his family to a relative’s home in Ohio. I met him in a parking lot and gave him $100 in gift cards for gas or food. The windows in his old car were steamed up and he looked toward his wife, three children and their dog. I told him I could help him with housing. He said, “It’s too late.” Then he thanked me profusely and said, “I wish I had met you sooner.” That’s when I knew.
CM: What fuels you to keep doing this work?
Norah Miller: Committed colleagues, support from the faith-based community and a lobby full of people including a 10 month old baby girl in an old stroller, extending her arms to me last week.
CM: When do you know you have made a difference?
Norah Miller: When someone – a recovering addict, a disabled veteran, a family with children – is handed the keys to their very own apartment.
CM: Tell us what success you have had? What has your impact been?
Norah Miller:Prior to its 501c3 designation, The Cornerstone was already recognized as the single point of entry to the county’s homeless and housing stabilization programs. $64,000 in private funding was raised in the first 9 months, $450,000 in government funding was allocated and more than 100 people a week receive assistance.
Norah and her team are working to make a difference. They spend every penny they raise on helping others, they do not have a web-site, a logo or a marketing budget. When I asked her what she needed she said, “Our vote.” The Cornerstone is one of three non-profits chosen to win a website. If you are so inclined to take three seconds to click this link, https://digitalboostvoting.isynergy.io to help an amazing woman who is helping others, then you too will be making a difference.
Every decision we make with our time is a choice. Thank you Norah for inspiring us all.
One person can make an enormous difference in the world.
One person-actually, one idea-can start a war or end one or subvert an entire power structure.
One discovery can cure a disease or spawn a new technology to benefit or annihilate the human race.
You as ONE individual can change millions of lives.
Do not limit your vision and do not ever compromise your dreams or ideals.”
Perhaps a big thought for a Monday, post Father’s Day but a great way to begin the week. The Power of One continues to be a driving force in my life, as I seek these incredible people out. On Wednesday, you will meet Norah Miller, one woman on a mission to change the face of homelessness in her community….a woman using her power to help those in need.
It is the Norah’s of the world, that fuel my belief, each of us does contain the Power of One. The real question we should be asking ourselves, is how are we going to use that power?
As Father’s Day is quickly approaching, I begin thinking about my dad. A wonderful man, with a big heart, heart disease and a history of heart problems. My Dad and I still spin together at least twice a week and he will be 78 this fall. However, a few years back, while in spin class my Dad’s heart stopped, while he was on his spin bike. Technically he died. Thankfully, due to the gym’s quick response and having a defibrillator (think the paddles on medical tv shows) close by, his life was saved.
The other day I came across the story of Michael Salem and it reminded me so much of my dad. Mike Salem was also a great guy beloved by all and in 2002 he was playing golf with friends when his heart stopped. Sadly, there was not a defibrillator near by and he did not survive. His company and co-workers wanted to do something in his memory, the result is The Mikey Network. A non-profit whose mission is promote healthy heart living and to provide public access defibrillators, which they call Mikeys.
Since 2003 the Mikey Network has raised millions of dollars, trained thousands on how to use defibrillators, placed hundreds of defibrillators in schools, camps, police cars and in public transit. More importantly than that, they have saved over 15 lives (that they know of) and counting, all because of one man’s legacy.
We never know when our time is up, that is something I have witnessed with both my parents. As a result, everyday when I exit my spin class with my Dad, I say loudly (in front of the entire class), “I love you Dad.” It just takes one moment to change everything….and it is people like Hugh Heron and The Mikey Network who have changed that moment for so many families.
I can no longer take moments for granted….and the beat goes on…
One of our dear friends lives in Athens, Greece and recently introduced me to a very special lady, Maria Kostaki. As most of you know the Syrian refugee crisis has had an enormous impact on Greece. While we all watch the news here in America with horror, many in Greece watch in person while children are orphaned and abandoned.
So many in Greece can barely take care of themselves with the financial crisis and feel helpless, but not Maria, she decided to act.
She did so in the most beautiful of ways, Maria wrote a children’s book, called When Clouds Embrace. Her mission to use her gifts, as an author, to help those in need. I had the opportunity to speak to Maria recently and here is our inspiring conversation, from this remarkable woman, who can no longer sit by and watch, but rather, who is using her talent to inspire, educate, and help these abandoned children.
Charity Matters: What was the moment you knew you needed to act?
Maria: The day that I woke up to the photograph that shocked the entire world. It was of the three-year-old Syrian boy washed ashore on a beach of Lesvos, an island that I visited many times for vacation. He was dead.
Charity Matters: What fuels you to keep doing this work?
Maria:The feeling that one day, I will make a difference, and maybe inspire others to do the same. I know that selling books won’t save the world, but I’m a writer, that is what I do, that is what I have to offer. I hope that people around me will realize that any help and kindness we can spare, on any level, can have an impact on the lives of others.
Charity Matters: When do you know you have made a difference?
Maria: I like to believe that I already have. I’ve raised awareness in my own circle, few people would have known that there are hundreds, maybe even thousands of kids, alone, without shelter, without access to food and clothes, without a grown up hand to hold, roaming a country, foreign to them. It’s terrifying, devastating, if you think about it.
Charity Matters: Tell us what success you have had? What has your impact been?
A large part of the funds for the publication of “When Clouds Embrace” was actually crowdfunded. I had contributions from all over the world, from people I did not know, from friends who I know are in tight financial spot here in crisis-stricken Greece. It was a humbling experience. But it was just the beginning. Success will be success when I donate the all of the proceeds to Giving for Greece, an organization that is doing wonderful work for unaccompanied minors.
But the first sign of success was seeing the “temporarily out of stock” alert for “When Clouds Embrace” on Amazon. It was its publication day.
As Pablo Picasso said, ” The meaning of life is to find your gift. The purpose of life is to give it away.” Thank you Maria for reminding us that there are so many ways we can help, support and inspire one another.
It is graduation season and along with graduations come a slew of commencement speeches. Last year, I was asked to give the Commencement address to my high school alma mater…..a wonderful crazy and surprising experience. A number of you requested this, but let’s be honest by late June..the last thing we want to see is another speech.
So, I thought I would share it with you here, figuring if the speech was going to land anywhere, it should be here on Charity Matters. The story is my own, the only one I have. The message is about finding that elusive thing we call happiness..when those intersections of passion and purpose connect.
As Pablo Picasso said, The meaning of life is to find your gift, the purpose of life is to give it away.”
“Tell me and I forget, teach me and I may remember, involve me and I learn.” Benjamin Franklin
A few weeks ago my friend, Alexandra invited me and a few of her inspiring friends, to a very special lunch. The purpose was not to catch up, but rather in a mentoring role. Alexandra has been involved with a local school here in LA, a place where barriers crumble and community grows. Students from all walks of life come together in this unique school to learn, thrive and grow.
Alexandra spoke to the school’s principal and asked for ways she could support the school and out of that conversation came this age-old and brilliant idea of real conversations with mentors. Something so simple, so perfect and truly missing in our busy lives.
The guest list of mentors included; our wonderful hostess and Friends With Causes Founder, a very inspiring Academy Award nominated documentary filmmaker, a super hip successful interior designer, and myself. We were asked to come armed with questions for these young ladies and to be ready to answer some as well.
None of us knew one another, and yet we were all there to learn and that in itself created a beautiful beginning for conversation. Our discussions ranged from prom dresses, to college, to boys, failures, careers, following your passion and my favorite question, “Who do you think you mentor or inspire?” From that question alone we learned about one girl’s experience with foster care, another who mentored after school at the Boys and Girls Club, another’s younger siblings….but more than that, you saw these girls (young and old) shift in the thought that someone looks up to them.
We all mentor someone, whether we realize it or not. Ask yourself whose life you inspire? I think you will find your self surprised and smiling too. That is the gift of mentoring, you always get so much more than you give.
They say all good things must come to an end. My question is when do you know? This month I am saying goodbye to two separate non-profit boards that I have had the privilege of serving on for the past six years. I’m not sure where the time went, but it appears my time has come.
The beauty of serving is that like life, our service is constantly changing as we do. As a child, I saved pennies for others because my teacher would give us candy if we gave to those in need….my earliest memories of giving were more to myself. As a teen, I worked at the Boys and Girls Club each summer. In college, I read to under-served students with my sorority sisters, in South Tucson. As a young mother, I volunteered and raised funds to build a new children’s museum in our town. The service always seemed to fit the season of my life.
These past few years, my service has come in the form of leadership. Six years ago, when one of the organizations approached me about joining their board, I was surprised, it was unexpected and yet, I was thrilled because I love their work and mission in navigating young men out of poverty and into college. During the past six years, I have witnessed incredible change, growth and seen hundreds of young men head off to college. A privilege to witness and serve.
The second board I will be leaving is my alma mater, my all girls Catholic high school. True confession, they did try to kick me out more than a few times when I was in high school, so I do receive enormous joy in both the sweet irony and in giving back to the school that taught me actions not words.
Most of all, I will truly miss the incredible people who have made both of these experiences ones I will always treasure. The time has come and now a new season has arrived. What it will bring, I have no idea…but I know I will be ready for whatever is calling.
Telling a magical Christmas story in May, might sound unusual but it is so beautiful, it simply can’t wait until December and since May is National Foster Care Month it seemed only fitting to share it now. A few weeks ago a woman from Maine reached out to me, via email, to tell me about her incredible friend, Janalee Moquin. Like most non-profit founders, Janalee truly did not want any attention on herself, said her girlfriend, via email. However, her friend was undeterred in wanting Janalee’s story told and about her amazing work with children aging out of foster care. I am so glad she did…
There is no place like home and for thousands of foster care children each year, who age out of foster care, they sadly do not know that feeling. Janalee Moquin was determined to impact and change that in any way she could. She told me, “I had a difficult childhood, and I know what its like to feel like you have no one. I knew I wanted to help that child, that I was.”
Janalee went on to say that the most magical moments and happiest memories of her childhood were at a Christmas tree festival in Massachusetts, where she grew up. Thirteen years ago when Janalee moved to York, Maine she decided to re-create the holiday tree decorating festival in her new town. She went out and bought 32 trees and asked friends to compete in decorating them, in hopes that people would come together, buy tickets, feeling the spirit of the season and the funds would go in some way to support children in foster care.
Well the first year, while her vision was there, the rest of the town didn’t really see it. The years that followed, little by little the idea caught on. The tree festival grew and grew and so did Janalee’s passion for directing the increasing funds into A Place Called H.O.M.E., which stands for Having Opportunity Means Everything.
Janalee worked with social workers to find these young foster care children who were told at age 18, goodbye. She knew they needed support, love, help, mentoring and just basic kindnesses that we take for granted. Janalee and her group of volunteers began asking these young adults what they needed, what would mean the world to them. Their answers, “birthday cards with our name on them, a care package that has something I like, that feels like someone knows me.” The simplest request.
Today, thousands of people come from over five states to attend the now four-day long tree festival. The people of York have tree decorating rooms set up all year in their homes for the big event. Janalee is a foster parent to a 16-year-old boy and knows that she has recreated her childhood holiday magic for her community, for thousands of children and more importantly for the foster care children her work supports.
She said, “I know I have made a difference when I see a photo of a foster care child smiling holding their birthday card and when I can witness a communities joy.” I asked Janalee, what fuels you to keep doing this work? Her answer, ” This is what I was meant to do and why I am on this planet.”
“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.”
A few weeks back I wrote about persistence, a common thread in all the amazing people I interview for Charity Matters. Most of these individuals, were dealt a bad hand in life and yet, how they chose to play it, is what makes them so inspiring. They not only refused to be defined by that hand, but rather they persisted in re-defining that experience into something life changing for others.
The other day I stumbled onto a major road block for a project that I have been working on and frankly, I was pretty frustrated and unsure which way to step next. I was driving through the tunnels on the 110 freeway when I looked up to see the sign…literally….which days before read RESIST and someone had now reworked it to read PERSIST.
In that moment, I knew that I would trudge on ahead, undeterred, fearless and committed to making a dream a reality, exactly like the 1.5 million people who have changed out world by taking their bad hand and turning it into a non-profit.
Mothers. We all have one or had one. Just the word warms our hearts and brings a flood of images and memories of our moms. For me when I think of my mom, I think of her huge smile , contagious laugh and the midwestern warmth she shared with every person she encountered. She was gracious and kind and her life was all about who was in it and who was in front of her. My mom was joyful.
I have been without her now for 15 Mother’s Days. It is just so crazy to think she was only 60 when her life ended so abruptly, a decade from where I am now. Yet, her legacy to me is the reminder of how precious life is, how you never know when your time will come and to live each day with joy and purpose.
She died as she lived, having fun with friends she loved and cherished. Even in the moments before her death, she was living fully with those she was with. It is this gift and reminder that I hold dear, as I celebrate her and Mother’s Day.
Wishing each of you and your mother’s the gifts of joy, presence, and cherished moments with those you love this Sunday.