While the post name sounds like the beginning of a bad joke, it is the reality for two New York City brothers Bradford and Bryan Manning who were diagnosed with Stargardt’s disease, a form of macular degeneration at the age of 7. Growing up they knew that their eye sight would continue to deteriorate over time, potentially leaving them both blind.
Rather than having that as a disadvantage both brothers pursued their goals attending University of Virginia and began careers in finance and sales. The two decided to quit their day jobs and begin a clothing line that would raise funds to cure blindness. Bradford, who is on the board of the Foundation Fighting Blindness believes that the science is there and that the research funding can cure their disease. The result is Two Blind Brothers.
These two brothers have made it their mission to help cure blindness. Their clothing is soft, has braille tags, which the brothers were taught to use as children for the pending loss of their eyesight and is flying off the racks. More than that, all of their proceeds go towards finding a cure. They do not take a salary and donate everything towards their mission.
They both believe the cure is with in sight. As Bryan said recently,”Call me optimistic but there is a cure in there.” Something we all want to see.
Have you ever had one of those dreams that was so real that you woke up feeling like it had really happened? Six years ago I had one of those dreams…..the dream was about a television show that made a difference in the world and created a national movement of service, the TV show was called Charity Matters. This dream terrified and inspired me to write it all down in a journal in the middle of the night.
The next day I wrote the first episode of the show, I reached out to some friends in the industry, registered the show with the Writers Guild and then thought… what am I doing? It wasn’t fear but rather the thought of …who just dreams something like this and then actually does it? I then thought maybe my dream was too big and I needed to back it down a bit and take a baby step first…that baby step was six years ago today…. and was the birth of Charity Matters.
At the time, I honestly couldn’t copy and paste a link, and knew nothing about blogging but as my husband said, “You knew nothing about starting a non-profit either, you just have to dive into the deep end of the pool and figure it out.”And so began the journey of tracking down my heroes, non-profit founders and people who are making our world better every day.
Charity Matters has connected me to the most inspiring people, taught me more about myself than I thought possible and has given me enormous joy shining a small light on beautiful people and their causes.
None of that would be possible without each of you. Thank you for inspiring me, sharing great stories, making introductions, lifting me up, cheering me on, stopping me and tell me how much a post meant to you and for that, there are not words to express my gratitude.
More than any of that, thank you for believing in me and reinforcing my belief that dreams do come true.
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.
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?
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.
“And when a shooting star streaks through the blackness, turning night into day… make a wish and think of me. Make your life spectacular. I know I did.”
Robin Williams from the film “Jack”
As graduation season begins to wind down, all of the words of wisdom that we have listened to these past weeks, continue to dance in my head. My hope is that some of the inspiration that has been shared with us will ignite or inspire us to act.
Each of us has or had dreams of doing something spectacular with our lives….we all have dreams. It is taking that dream and taking the first tiny step towards it that begins the process.
We can all make our lives spectacular, and it starts with one tiny step.
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.”
“Don’t live down to expectations. Go out there and do something remarkable.”
Graduation season is in the air and with it come all of the inspiring pearls of wisdom that go along with the celebration. It is oh so easy to give advice and it is oh so difficult to use it. Every time I speak to a non-profit founder I hear passion, purpose, joy and gratitude in their voices, regardless of where they live or their cause.
The reason is that they have not set out to do something remarkable, they just paid attention to the signs, one thing lead to another, the knew they needed to do this one thing and then they reached out to inspire others to help them achieve that goal….which ultimately became a non-profit and something remarkable.
Each of us makes daily choices with our time. How will you use yours to do something that inspires passion, purpose, joy and gratitude? ” Don’t live down to expectations. Go out there and do something remarkable.”
The common thread between all of these extraordinary individuals? Gratitude. Each one is grateful to have either survived their journey and inspired to help their fellow veterans. Or they are like you and I, ordinary Americans, filled with gratitude for the country we are blessed to live in and the freedoms which we have. They have used that gratitude to fuel their work to serve and honor our veterans.
So today, I will take a page from Carolyn and Rob’s book of gratitude, as I reflect on those who sacraficed to serve us. I am filled with gratitude for these heroes who gave their lives for something bigger than themselves…..
“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.
I am not a stalker, but lets face it…we all like to follow certain people, whether on Instagram or in the media, it could be a top chef, an author, or a celebrity. What these individuals all have in common is that they intrigue us, they seem to be living their purpose. They know who they are and seem to know where they are going.
That person for me isn’t Victoria Beckham or Oprah, while I’m sure they are lovely, the person who I have loved to follow is young man I met in Watts at Verbum Dei High School five years ago and his name is Caylin Moore. He is the one I am following.
As a young man he was a student athlete, a stand up young man with a deep faith. I have followed him via the media, when he headed to Marquette on a full scholarship. I watched when he became a Fulbright Scholar, and then when he landed in my literal path at TCU in February, I was stunned.
I followed Caylin as he created SPARK at TCU to inspire young underserved youth to follow their dreams and to become whatever they dream of. I sat in front of him as he said he had to give back to those that helped him along the way.
Now, I will watch from a far, as he graduates from TCU and heads off to Oxford, England to become TCU’s second Rhodes Scholar. We all need heroes, people to look up to and to inspire us to be our best…Caylin Moore is mine….and one to watch!