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.
“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…”
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!
This upcoming weekend we will celebrate our moms for Mother’s Day. Last week, I had an incredible conversation with two inspiring mothers, who have taken their journey into motherhood and transformed the lives of hundreds of young mothers in the foster care system. These amazing women founded Alliance of Moms, a non-profit organization whose mission is to break the inter-generational cycle of babies born to teens in foster care.
Yasmine Delawari Johnson and Jules Leyser were both pregnant in 2012, along with three other girlfriends (Danika Charity, Emily Lynch and Kelly Zajfen) all at the same time. For some it was their first child, for others their second or third but the girlfriends all experienced a profound change in becoming mothers. Together they were determined to use that shift in each of them to help other mothers, the most at risk, those in the foster care system.
Yasmine:I was pregnant with my son, having a child makes your heart burst wide open and makes you see everything every differently.I wanted a part of motherhood to be looking out for all children, not just our own. From my previous work withThe Alliance for Children’s Rights,I knew we needed to explore more volunteer opportunities for children’s rights.
Jules: My mother grew up in foster care and was a teen parent at 17. I understood the need to break the cycle, 66% of babies born into foster care become teen moms. I also understood that my child had won a lottery that he didn’t even knew he entered, just by luck. We needed to help support all mothers.
Tell us about when you knew, your work had made a difference?
Yasmine: In July 2014, five of us began exploring this idea of creating an auxiliary group to support The Alliance for Children’s Rights but more than that we wanted a mother to mother, community to community event. Six weeks later, we had our first program, Raising Baby, inviting 70 youth in foster care and their children for a day of fun, educational parenting workshops. We were determined to be there for these moms, when so many have let them down.
While we set out to serve these young women in foster care, our members were also impacted by serving. The women we serve have changed all of our lives for the better because regardless of your circumstances, we all walk away stronger knowing that we all struggle as mothers.
What fuels you to keep doing this work?
Jules: Having a hands on relationship with our pregnant girls and seeing them on an upward trajectory. Knowing that these young mothers are now talking and singing to their unborn children, or reading to their children at bedtime, creating family rituals, and using the little things that we teach them, which have a big impact on their children.
These young parents are motivated to change their lives and their children’s’ and more than that, it is seeing people being kind.
Yasmine: My dream would be to create something sustainable and scalable that we could take outside of Los Angeles and to other communities of mothers across the country. We know and see the value of creating community and a village for mothers.
Jules: My dream would also be to see our program expand to other places and perhaps to help all teen moms. The real dream would be to have the public start seeing these young moms in a different way…with humanity and empathy.
As Yasmine and Jules both said, “We are all different and yet we are all the same. We all want the best for our children, we all get overwhelmed, stressed, worried that we are not doing the right thing. We are all learning about ourselves and our children as we struggle to do our best.”
Over 600 members, hundreds of families and young mothers served and countless lives forever changed by a group of mothers who know what it is to share the love, create an alliance and to inspire us all.
As many of you know I run a non-profit youth leadership organization as my day job. One of the things I love the most about my job is having the privileged position to inspire thousands of middle school students each year by teaching them how to serve others. In order to do that effectively, we look for non-profit partnerships with amazing causes. This year we partnered with a remarkable organization called Cell Phones for Soldiers, that was started by two kids, brother and sister, Rob and Brittany Berquist in 2004.
These two heard about a soldier with an $8,000 cell phone bill and decided that just wasn’t right. What these two siblings did next was even more surprising and the most inspiring story to inspire thousands of today’s kids.
Rob, who is now 27 ,and still runs Cell Phones for Soldiers has continued his mission to ensure that no military service person should ever have to pay to call home. Today, his sister Brittany works in marketing for the Kind Company. To date Cell Phones for Soldiers has donated over 300 million minutes in free talk time, recycled more than 15 million cell phones and still mails about 1,500 calling cards to service men and women around the globe per week.
This past January, Robbie and Brittany were honored by Forbes Magazine in their 30 under 30 issue for their incredible, vision, service and mission. What began simply because a brother and a sister saw an injustice and wanted to right a wrong, turned into something, so very right.
“Thousands of candles can be lighted from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.”
I am constantly inspired of how goodness creates more goodness.
The past eight weeks I have been in the privileged position of working with thousands of middle school students to teach them about service. This year our organization talked to our students about an amazing non-profit called Cell Phone for Soldiers, that was started by two teenagers in 2004……you all will hear their story on Wednesday.
What was magical, was sharing a real life story about two kids who made a difference and how quickly, their story inspired thousands to do the same. Goodness does create goodness and thousands of candles can be lit from a single flame.
A few years ago, my husband and I went to Wisconsin, where he competed to become a nationally ranked triathlete. We were sitting at an outdoor restaurant over looking a river, when I struck up a conversation with an older (in years only) gentleman, whose name was Don Ardell. He was competing in the 70+ age group, where he is and continuous to be, the number one ranked triathlete and national champion in three sports, at the age of 79. He is a remarkable man and over the years we have become pen pals of sorts.
So, last week when I received this note from him in reference to previous week’s Gandhi quote, I had to share it with you…..It was so beautiful, I began to cry.
Here is the note from Don below….
Reading the Gandhi quote (Man becomes great exactly in the degree in which he works for the welfare of his fellow-men) led to my reflection on one of Ingersoll’s speeches that I think is a partial blueprint for the embrace of the common decencies, namely his “Improved Man” address, delivered in New York on February 23, 1890. Here are the concluding words of this lovely talk:
The Improved Man will not give his life to the accumulation of wealth. He will find no happiness in exciting the envy of his neighbors. He will not care to live in a palace while others who are good, industrious and kind are compelled to huddle in huts and dens. He will know that a great wealth is a great burden, and that to accumulate beyond the actual needs of a reasonable human being is to increase not wealth, but responsibility and trouble.
The Improved Man will find his greatest joy in the happiness of others and he will know that the home is the real temple. He will believe in the democracy of the fireside, and will reap his greatest reward in being loved by those whose lives he has enriched.
The Improved Man will be self-poised, independent, candid and free. He will be a scientist. He will observe, investigate, experiment and demonstrate. He will use his sense and his senses. He will keep his mind open as the day to the hints and suggestions of nature. He will always be a student, a learner, and a listener–a believer in intellectual hospitality. In the world of his brain there will be a continuous summer, perpetual sees-time and harvest. Facts will be the foundation of his faith. In one hand he will carry the torch of truth and with the other raise the fallen.
As we hit mid- week, I share Don’s words, wisdom and gift with you. A man who inspires others to be their best, to live a healthy lifestyle and shows us all by example what a life well lived is truly all about….most assuredly, an Improved Man.
I often find myself mindlessly scrolling Facebook, when I’m standing in line, bored or looking for some type of meaningful distraction. The key word being meaningful. So as I sat down to write and came across this video from the other say, I knew my writing direction had taken a swift turn.
The story is about a young Muslim man, named Ibn Ali Miller, who came upon two young men who were beginning a fight. A crowd was gathered to watch the neighborhood street fight, when Ibn interrupted to talk to the two young adversaries. He calmed them both and drew the crowd’s attention, who naturally, filmed the entire thing.
It was not the words he spoke to the boys that touched my heart but rather the words he shared with the press, about growing up in poverty, his mother, staying on the right path and the best way to use his 15 minutes of fame.
Every week I bring inspiring people to your attention. This amazing soul reminds us all that charity starts at home, in our neighborhoods and most importantly inside our hearts.
If you have been a long time reader of Charity Matters, you know I have certain causes, as we all do, that are near and dear to my heart. As a result, I love to re-visit these from time to time. In 2014, I wrote a post on a most remarkable young man from Verbum Dei High School in Watts (a favorite cause of mine for sure) and his name was Caylin Moore.
Last week, while I was at TCU, this inspiring young man and I had a few minutes to connect and hear about his incredible life in the service of others. Caylin grew up in Compton, with a strong single mother, two siblings and a deep faith. He attended Verbum Dei High School, where he was a scholar student and star athlete. After high school graduation he headed to Marist College on a full scholarship to play football. He became a Fulbright Scholar and then transferred to TCU and walked onto the football team.
I came across a Charity Matters post from 2014, which opens with Caylin being asked where he sees himself in five years. His answer was insightful, as were his feelings about college. He said, “You go to college to change the world.”
Today, Caylin is still studying hard, working on a book, running his campus organization called SPARK (Strong Players Are Reaching Kids) where he and fellow athletes are inspiring the underserved youth of Fort Worth to be their very best and to dream big. Caylin is also getting ready to head to Oxford, England as a Rhodes Scholar.
I can’t wait to circle back in a few more years and see how this remarkable man continues to inspire so many in his faith and service to others. A force in forward motion and compassion.
Late February and early March may be a gloomy time of the year in most parts of the country, but if there is one thing that brightens all of our lives it is the beginning of Girl Scout cookie season. Half of the year I suffer from a mild depression when my freezer no longer contains thin mints and don’t get me started on how much I love tagalongs. This year, there is something really special about all of this, its the 100th Anniversary of the Girl Scout cookie and their sales. Who knew a cookie could make such a difference in all of our lives?
The other day with my cookie order on my mind, I had a great conversation with a friend, who told me I needed to meet one of his dear friends, an amazing woman named Frances Hesselbein. My friend, author Mike Stallard, began describing this incredible woman who transformed the Girl Scouts and so many more lives. I knew I needed to know more about this amazing woman and how she has used her life to inspire so many others…
Frances, the mother of one son, went from Girl Scout troop leader to CEO of the Girl Scouts and was accredited with turning the organization around. She grew the organization to over 2,25 million girls and had a volunteer workforce of 780,000 during her time. In 1998 she was awarded the Presidential Medal of Freedom for her work with the Girl Scouts.
In November, 2011 she told Forbes Magazine, “When I left the Girl Scouts in 1990, it was the largest organization for girls and women in the world. Six weeks later I found myself CEO of the Drucker Foundation, with no money, no staff and just a powerful vision. Peter encouraged us to focus on the type of change that will determine whether or not we are, all of us, a part of the future.”
Today the Girl Scouts is the world’s most successful organization dedicated to creating girl leaders with 3.2 million active members and over 59 million alumni! Truly nothing sweeter than using your life to make others better. Frances will be 102 in November.
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.