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.
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.
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…
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.
As February comes to a close I wanted to make sure that the last post of the month was about the heart. As many of you know I became friends with a wonderful family, the Pages thorough my work at Childrens Hospital Los Angeles. They are an inspirational family and despite the adversity they have faced in light of their son’s congenital heart disease, they always find a way to turn a negative into something positive for someone else.
Some of you may remember Max, as young Darth Vadar in the infamous Volkswagen commercial a few years back. I received an email from Jennifer the other day about a new campaign Max is helping shine some light on, called Mended Little Hearts.
This inspiring organization began in 2004, when four heart patients came together in Boston to discuss their heart surgery experiences. Out of that meeting came the recognition to support these families of children born with heart defects and heart disease.
Today, Mended Little Hearts has over 10,000 members and over 80 Chapters in the U.S. and Mexico. Proof that one heart can heal so many others.
“If someone had raised funds for research for us 30 years ago and our baby was given a chance to live. Ten years from now will be a whole different ball game into medicine, science and technology into heart defect research. We don’t want to wait for what doctors say ‘will be….’ we want to fund research to change the future for ‘what can be…’ for all children, like my beautiful Joshua suffering from heart disease. Out of our heartache, there is hope….”
The words above were sent to me five years ago from non-profit founder, mother and champion for families dealing with congenital heart disease, Francie Paul. I spoke with Francie and board chair of Saving Tiny Hearts, Larry Kluge, to see what has happened since they began this journey over a decade ago to bring awareness and research to Congenital heart disease .
CM: What do you want people to know about Congenital Heart Disease?
Francie: I want people to know that twice as many children die from heart disease versus all pediatric cancers combined and that cancer receives five times the funding for research.
Larry: Over a million children are born each year with congenital heart disease.
CM: What is your goal at Saving Tiny Hearts?
Francie: Our goal is to fund a project that will not only save our son’s life but to ensure that no one else should ever have to go through this.
Larry: We have been able to fund over 30 research projects that keep getting us closer to making this a dream a reality. We want to find the answer that makes Saving Tiny Hearts obsolete.
CM: What keeps you going?
Larry: The love, passion and support of our community is extraordinary and the researchers we support.
Francie: People carry you through your darkest days and they have made our journey all the more humbling. It is the heart, hope and passion of our team. We are all a part of this.
As Francie said, five years ago “Out of our heartache there is hope.”
February is heart month. Over the years, I have interviewed so many people with such heart warming stories, but one that has truly touched me is the story of the Paul family and their journey as parents of a child living with congenital heart disease.
You may remember them, because they are extraordinary people who took their pain and turned it into a non-profit foundation called Saving Tiny Hearts.
When I first interviewed Francie Paul five years ago she sent me this note, which I wanted to share here today. On friday, I will tell you what the Paul Family is doing now.
Thank YOU for your beautiful post– we are extremely honored to have Saving tiny Hearts featured.
We did have high profile malpractice attorneys at our doorstep…practically before we were out of the hospital from Joshua’s firstheart surgery…it wasn’t who we were…our life’s mission came out of the greatest need for medicine and science into heart defects to catch up to support all children, like our little love, afflicted with heart defects.
Starting the Saving tiny Hearts Society began before our Joshua’s second heart surgery (- he has had 3) at 3 months old, after pediatric heart surgeons told us that there was a desperate need to fund research, that young hungry scientists were being turned down for government funding because they didn’t have enough monies to beef up their revolutionary proposals….which is where we would come in, to provide the seed money for it all.
Most people don’t realize that so many babies and children do not survive because of lack of research to save them. We didn’t know that it was the #1 birth defect in the world and the #1 cause of birth defect related deaths….we didn’t know that it could happen to our baby.
Someone had raised funds for research for us 30 years ago and our baby was given a chance to live. Ten years from now will be a whole different ball game into medicine, science and technology into heart defect research. We don’t want to wait for what doctors say ‘will be….’ we want to fund research to change the future for ‘what can be…’ for all children, like my beautiful Joshua suffering from heart disease. Out of our heartache, there is hope….
I don’t know if you had seen the movie ‘Something the Lord Made’ but it was an HBO movie about one of the very first heart surgeries ever performed, the Blalock-Taussig Shunt (-BT Shunt). It was the very first successful heart surgery that began with a blue baby as doctors were afraid to touch the heart and felt that of these babies wouldn’t live otherwise, so they would try this most revolutionary procedure on a baby first. Nearly 60 years later,at 4 days old, after our baby was stabilized, he had a Blalock-Taussig shunt.
We can’t thank you enough for sharing our story; it has truly been a humbling journey for us and in the greatest of heartache, we have seen the very best in friends. Can’t wait to read more Charity Matters and see all of the amazing things that are happening because of you.
Today is February 1st and the beginning of heart month. Over the years, I have interviewed a number of non-profit founders who have started incredible organizations to find a cure for congenital heart disease, which is the number one birth defect in the world.
This month, I will share some of those stories with you and re-visit some old Charity Matters friends to update you on their progress. I came across musician and heart transplant recipient, Paul Cardall’s video the other day and thought it sets the stage for this important month.
So, as we begin the month of February, let’s all remember to keep our hearts open to those who suffer with this horrible disease.
On a rain soaked day, a couple of weeks ago I met the most remarkable woman for lunch, her name is Katie Quintas. Katie is a living example of C.S. Lewis quote, “Hardships often prepare ordinary people for an extraordinary destiny.” Katie’s hardship re-routed her destiny.
Katie’s life was fantastic. She had a husband, Silvio, she adored. A wonderful son, Bryan and a fantastic career consulting non-profits. Then all of that changed in 2006, when her husband Silvio was diagnosed with leukemia and six months later, her only child Bryan, was diagnosed with Stage Four Non-Hodgkins Lymphoma at age 16.
Katie’s employer was supportive as she tried to manage a full-time job and the two most important people in her life’s cancers. What Katie didn’t realize was how was she going to manage to cook, clean, do laundry, grocery shop, update everyone on Bryan and Silvio’s conditions, deal with the offers for help, all while working and driving between two hospitals over an hour apart from each other? She was overwhelmed, wondered how families manage and didn’t even know where to look for help.
It turns out that she was not alone.
As 2007 came to an end, and both Katie’s husband and son were finishing up their cancer treatments, she began looking for organizations that help families through daily life during an illness, especially the illness of a child. In 2009, when she still hadn’t found an organization that fit the need, she began discussing the idea of creating one with her husband Silvio. With her husband’s encouragement, she did just that launching Here to Serve.org in 2011.
The Quintas family had been through so much but realized that there were so many people who had less. With Silvio’s support Katie set up her non-profit to connect and create online care communities that come in at the beginning of the health crisis to organize, friends, resources, medical information, funding, support all without overwhelming the caregiver, who is typically the parent.
As I sat at lunch and listened to Katie’s story, it was almost too much to process what she had been through but even more to grasp what she does for others. When we both went onto her web-site together and I saw what a care community looked like for a family, it was unbelievable. Once I was part of a sick patients community, I could sign up for everything from walking the dog, bringing a meal, doing laundry, running an errand, donating groceries and the list goes on. The services Here to Serve provides is everything that Katie needed when she went through this and didn’t have.
Sadly, Katie lost her beloved husband to cancer, but she said his memory still keeps her going. Katie told me, “I can’t imagine not doing this. Here to Serve gets me up in the morning, it motivates me and I was created to do this work. This is my purpose.”
On Sunday night I curled up on the sofa for one of my favorite TV nights of the year, to watch The Golden Globes. Unlike the Academy Awards, this show feels like you are at a party you were invited to. So when I saw this story on last night’s news, about the Golden Globes and an amazing non-profit’s photography program, I had to share…. especially since this week was already devoted to photography and how it makes our world better.
In 2008, when Jo Ann Thrailkill and Jeff Castelaz’s son, Pablo, was diagnosed with a rare childhood cancer they wanted three things; to fund research for a cure, to help educate families dealing with cancer and to improve the lives of children living with cancer through the arts. Pablo lost his battle at only six years old but his family was determined to help others and in 2009 began the Pablove Foundation to continue their mission.
So what does this have to do with the Golden Globes you ask? Well, one of their programs is called Pablove’s Shutterbugs and the goal is to give pediatric cancer patients a new perspective through the lens of the camera, in order to learn to express themselves and find a new way of seeing things. Well one of these little shutterbugs was the cutest paparazzi on Sunday’s Red Carpet, take a peek…
Pablo’s legacy lives on in the over 1,000 students who have been reached through Pablo’s Shutterbug program since 2011. The foundation has funded over 19 research institutes worldwide with over 1.9 million dollars given to find a cure. Now that is a picture worth smiling for.
The second Sunday in December is an international day of remembrance for children that have died. Every year, in the middle of this crazy hectic season, I curse trying to get to this candle lighting event, I am running on empty and overload, a million lists rushing through my head…..and then I walk into the auditorium…..where I am greeted by hundreds of faces, many who are wearing their deceased child’s image on their t-shirt or clinging to a framed photo, as if it is a life raft…and I pause.
It is then, in this moment, that I know what is truly important. It is here, as I begin to hear one parent share the story of their child’s short journey on this earth and the big impact this small life had on so many, that I know what matters. In this room is full of sniffles, tears and broken hearts the traffic is forgotten, the holiday list vanish and all that remains is love and compassion.
The emotion is palpable and the love and connection these people feel for one another, although strangers, is real. For each of them has walked this path, a hellish journey where they never feel whole again because they have lost a child….their child.
Over 40 years ago, in 1969, a chaplain at the Warwickshire Hospital in England brought together two sets of grieving parents, realizing that the understanding and support they could give one another was greater than he could provide. At that kitchen table the Lawley family, Henderson family and chaplain, Simon Stephens created The Society of Compassionate Friends.
Today, The Compassionate Friends has over 700 chapters nationwide to offer friendship, understanding and hope to bereaved parents, siblings, grandparents and family members when a child has died. There are TCF chapters in more than 30 countries around the world, lead by volunteers who are bereaved parents, siblings and grandparents.
This Sunday, December 11th at 7pm, in time zones across the globe, the world’s largest mass candle lighting event will create a 24 hour wave of light in remembrance of a child gone too soon. I will be lighting a candle for so many, gone too soon and once again be grounded in what it is that truly matters…..love.
Last week I was invited to my friend, Alexandra Dwek’s home for another amazing and inspirational evening in support of Friends with Causes. Not book club or bunko but girl’s night with a wonderful speaker, cause and philanthropic goal. We are always surprised by the non-profit, the speaker and are completely engaged and last week’s dinner was no exception.
The first speaker was Kate Edelman Johnson, who shared the journey of her loving husband’s slow deterioration with Alzheimer’s. Kate reached out to her friend’s daughter for guidance, Patti Davis, who been through the journey with her father, Ronald Reagan. Kate spoke about what caregivers and loved ones of Alzheimer’s patients endure with this disease.
Kate began attending Patti’s Beyond Alzheimer’s support group and soon realized that she was in the position to not only support Patti’s amazing work but also the bigger problem of funding Alzheimer’s research. So Kate founded the Deane F. Johnson Alzheimer’s Research Foundation. She told us that without the discovery of new treatments, the number of Alzheimer’s victims will grow from 35.6 million to 65.7 million in 2030.
As we listened to Kate share her journey and then Patti Davis sharing hers, both as a daughter and as someone who has spent the last six years with these families in her work. Patti told us, “You need to be with other people who know what you’re going through, who won’t judge you or dismiss you. Several group members have told me that, before coming to this support group, no one had ever asked them how they were doing.”
These family members become patients too with this disease and it is people like Kate and Patti who take their suffering and turn into hope for others, that continue to inspire.