Earlier this week I posted about losing legends, well it appears that on Monday, we lost another one. Her name was Claire Wineland and she was 21 years old. 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 was terminally ill and what we would think of as tragic, she simply used as fuel. Her message and life were truly remarkable.
Claire endured over 30 surgeries in her short 21 years and 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 once 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 moved out on her own, decided not to go to college because she was not sure she would live long enough to graduate. She spent 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 by decorating children’s hospital rooms in Las Vegas.
Claire’s message is a reminder to us all. If you give yourself one gift today, listen to Claire’s talk (above). She was 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 lived her life as an example to each of us. Even in her death her organs were donated to help over 50 people. In her last video Claire said, “Go enjoy your life. I mean really seriously, go enjoy it, cause there are people fighting like hell for it.” Claire’s legacy tells us that we not only have the power to help…. but more than that…..to live our lives fully.
Birthdays are always cause for celebration, for coming together and for presents. If you are receiving this today for the first time, this is my birthday gift to you. Today is Charity Matters 7th birthday and in honor of that I wanted to give each of you the weekly gift of inspiration. For the past seven years I have been on a mission to share the stories of the most incredible people, those who give of their lives to make others better. As quick as a cup of coffee, a short inspirational read that starts your day with an uplifting story, a quote, or a thought to that leaves you thinking positively.
In the past seven years, so many of you have followed this journey and come along to meet incredible people like JoAnn Thrakill of Pablove, Jenny Hull of Once Upon a Room and so so many more….all who have taken their challenges and turned them into something positive for the next person. Almost a thousand posts later and I am continually inspired, uplifted and motivated by these individuals who show us the best in ourselves and who we can be.
Charityis defined as help, aid and contribution. It is not about money, but rather it is about converting passion into change. Matter is a substance, a subject and something of importance and that is what Charity Mattersstrives to provide.
So thank you for all of you who have joined me along the way and welcome to those of you who are just joining in. We are each a link in the human chain that joins us all. I hope you will stay and be a link that connects people and causes that matter. Like any birthday gift you don’t want you can always return it (or unsubscribe) or you can regift it and share it with someone else. I know together we can do anything.
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
As we begin to wrap up the year and look back at what we accomplished in 2017, I am always amazed by the incredible nonprofit founders we met this year. Their hardships, determination and passion to turn their journey into an organization that gives to others…. simply an endless source of inspiration.
So before we look ahead, lets take a moment to recall some of these extraordinary people we talked to in 2017:
Katie Quintas with Here to Serve showed us that in the face of adversity of having a husband and a son with cancer, she would create an organization to serve families whose children have cancer. Katie combines technology , her ability to connect and compassion to help families with items from food, to groceries to medical expenses.
Francie Paul with Saving Tiny Hearts, took her experience having a newborn with congenital heart disease to create an organization that funds research to save these tiny babies born with congenital heart disease. One of the loveliest humans with the biggest hearts I have ever spoken too.
Rebecca Pontius of the Do Good Bus. Rebecca and her friends decided that doing good together is fun and makes the world better, so she created a nonprofit that brings groups of people together to volunteer and do good. A fun way to serve, connect and make a difference.
Andy Goodman of the The Goodman Center shared how to use the power of storytelling as a tool to impact the world.
Two amazing women, Yasmine Johnson and Jules Leyser of Alliance of Moms created an organization to break the intergenerational cycle of teen mothers in foster care and inspired me with their incredible organization. These two women are beautiful inside and out and ones to watch for sure!
Jennifer Hull and daughter Josie, founders of Once Upon a Room, transform hospital rooms for the sickest children, think Extreme Home makeovers on hospital rooms. Their story is beyond inspirational and one for all to see.
Hand to Hold‘s Kelli Kelly inspired us all with her story of being the mother of a premature baby and the struggles that ensued. The result is her incredible organization that supports families through this challenging time. A beautiful story of love and compassion.
Hope and Comfort‘s Jeff Feingold’s amazing story of taking his child’s birthday party and turning it into a nonprofit that provides soap, toiletries along with Hope and Comfort to thousands of children in the Boston area.
Annie Cannons The incredible story of Laura Hackney and Jessica Hubley’s remarkable adventure to end human trafficking in the United States. A nonprofit that not only teaches women how to write computer code but gives them skills, an education, hope and the ability to break the cycle and create change for others. Two of the most inspiring women and the most brilliant organization that is approaching a horrific topic in a fresh and empowering way.
JoAnn Thrailkill of Pablove showed us that even when your loss is overwhelming, there is love and hope. JoAnn shared the tragic story of losing her son, Pablo and creating a lasting legacy of hope for children with cancer. JoAnn’s words haunt me, “The experience of starting Pablove has allowed me to always see the light. I am now reminded daily of the love that surrounded me during one of the most difficult times in my life.”
It is people like JoAnn and all the other incredible people we met this year that will inspire me moving forward into 2018. The sources of inspiration are endless, the people awe-inspiring and there are so many others we met this year that I hated not including. My dream for the New Year is to share as many of these heroes as possible with the world. It is obvious to me that we simply need more heroes. They are all right here, every week, sharing their challenges, journey, humanity and hope for us all. Thank you for subscribing via email to a little soul and inspiration this year, for liking our Facebook page, commenting or sharing a post. It takes a village to spread the word of light, hope, goodness and charity.
Wishing each of you blessings in the New Year filled with love, gratitude and kindness to all.
Sharing is caring, if you are so moved or inspired, we would love you to share this to inspire another.
I am always so amazed that is the same time each year that I find people asking me for suggestions for raising philanthropic children. As a result, I share this post once again as refresher for all, holidays or not.
When my sons were younger I wondered if they were really understanding what we were doing as a family for others. We wanted to raise compassionate and charitable children, good humans. While my sons are far from the poster children for philanthropy, they certainly do a lot to help others. I am proud that each of them has found different ways to give back and share the gifts that they have been given. My oldest has a passion for serving inner city children. His younger brother, has recently gotten behind Movember and men’s health through his fraternity. His house is one of the top Greek organizations in the country for fundraising this year. The youngest, at 16, has recently gotten involved with a nonprofit, Once Upon a Room, that does hospital room makeovers for very sick patients.
Each year at Thanksgiving, we sit down as a family and decide what our family will do this season to help others. We have adopted soldiers for a year, adopted families over the holidays that could not have Christmas, we have wrapped gifts at local Childrens’ Hospitals and voted on which non-profits we want to support. Each person trying to convince the others why their cause is most worthy.
The reality is that there is no simple answer to this question and that raising charitable children is an ongoing process. Families now have resources such as the nonprofit Project Giving Kids, which cultivates volunteer opportunities for young children and families. I read an article recently that said role modeling philanthropy is simply not enough. The article referenced a new study from the Women’s Philanthropy Institute at Indiana University. The director, Debra Mesch, said “the research showed that talking to children about giving increased by 20 percent the likelihood that children would give.”
Here are a few tips to remember as we approach the season of giving:
Six Tips for Raising charitable children:
Start early, as early as 4 or 5 years old. Giving becomes a habit.
Talk to your children about what causes interest them and bring causes to their attention.
Be intentional by involving your children in your own charity endeavors.
Use online tools to research organizations to involve your children
Be consistent. Make charity a part of your traditions, the holidays and birthdays.
Emphasize the joy because giving feels great.
Benefits of raising charitable children:
Opens children’s eyes to the fact that others are not as fortunate as they are
Develops empathetic thinking
Fosters an appreciation for what they have
Correlates to improved performance in school
While this topic is relevant for the holidays, it is important to remember that giving does not just happen once a year. Teaching the gifts you receive from giving should be a part of the year, not simply the season. Once your children feel how great it is to give, their lives will forever be altered in wonderful ways.
Sharing is caring, if you are so moved we would love you to share the love and inspire another.
Like all good fairy tales, it begins with once upon a time…there was a beautiful woman named Jennifer Hull and her heart was so huge that she not only adopted one child but created a non-profit to help hundreds more sick children at children’s hospitals around Los Angeles. Jennifer and I have known each other for a 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.