Category

Health

Category

Pablove

The world is full of amazing and inspiring humans, they are all around us. When you have a moment to learn someone’s life story, it is a privilege to share it.  Last week, I had the most fun and fantastic conversation with Jo Ann Thrailkill, the founder of Pablove.org, a nonprofit whose mission is to invest in underfunded cutting edge pediatric cancer research and improve the lives of children living with cancer through the arts.  I know she will warm your heart  and inspire you as much as she did me. Here is our conversation:

Charity Matters: What was your background before starting Pablove.org?

JoAnn Thrailkill: In my 20s through my 40s I was a music video producer. I absolutely loved my job and was living a dream. I was a single mother with a fantastic life and career. When I met my husband Jeff, who is also in the music business, and we had our son Pablo, I decided to slow my career down a bit and focus on my family and time with my two sons.

When Pablo was diagnosed with a rare pediatric cancer in May of 2008 everything changed. I went from producing music videos to trying to Executive Produce Pablo’s treatment and care. While Pablo was sick we had so many people who wanted to help, bring food, do something. A co-worker of my husbands, started a PayPal account just so people could do something. We were so involved with Pablo we weren’t really aware of how many people were supporting us through this. 

Charity Matters: When did you realize you were going to start a nonprofit?

Jo Ann ThrailkillWhen Pablo died six days after his 6th birthday we were devastated,bereft and overcome by grief. We were also overcome by people’s kindness and generosity. People really wanted to help us in so many ways, it was overwhelming. When we went to gather pictures for his memorial service, we found so many photos that Pablo had taken with all of our devices. They were everywhere and we had no idea he was such a photographer.

A few months after his death, my husband decided to ride his bike across the country, to deal with his grief and process all that had happened. When he came back, his co-worker asked, “What do you want to do with this PayPal account and the funds?” To be honest we had forgotten about the account and didn’t think it could have had more than a couple thousand dollars. To our total surprise there was over $250,000 and in that moment we felt an overwhelming responsibility to all of these people who had supported us and Pablo.

When my husband said, “You need to executive produce this,” meaning the beginning of Pablove.org, that was the moment.

Charity Matters: Where did you start?

Jo Ann Thrailkill: I went to see Pablo’s doctor, to get a direction and he asked me, ” What would you have wanted that you didn’t have when Pablo was sick?” And my answer was a cure. So I knew we were going to need to invest in research since pediatric cancer research is so underfunded, only 4% of cancer research funding goes towards childhood cancer.

He then asked me what Pablo would have wanted and I knew it was something in the arts and Pablo loved photography. I knew that Pablo just wanted to feel like a kid when he was sick and that his photography had been a form of self-expression. So that is how we began the Shutterbugs program which teaches children and teens with cancer the art of photography.

Charity Matters: When do you know that you have made a difference?

Jo Ann Thrailkill: When the kids tell us that working with a camera and photography has been a life changing experience for them. That is when you don’t want to stop and know you need to keep going. In addition, to know that we have created an organization that is filled with optimism, joy and laughter. 

Charity Matters: Tell us the success you have had?

Jo Ann Thralkill: Our very first year in 2010, my husband did a bike ride across the country again but this time to raise funds for The Pablove Foundation and we raised over $500,000. The momentum continued and we were able to fund a grant our first year. Today, almost ten years later we have thousands of Shutterbugs in 16 cities across the country and have provided seed funding for pediatric cancer.

Since 2010, we have awarded more than two million dollars in Childhood Cancer Research Grants to over twenty institutions worldwide.

Charity Matters: What life lessons have you learned from this journey and how has it changed you?

Jo Ann Thrailkill:  This entire experience has been completely life-altering for me. I think one of the major things I took away from my own family’s cancer experience was that just when you think the world is filled with darkness and hate, you discover that it is actually filled with love.

Things don’t always end up how you hope or plan that they will, but when we were in the trenches of treatment with Pablo we discovered the most amazing support from our community and everyone around us. This gave us not only the financial support but the emotional strength that we needed to start the Pablove Foundation. 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.

charity Matters

 

Sharing is caring, if you are so moved or inspired, we would love you to share this to inspire another.

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

Hand to hold

A hero is someone who has given his or her life to something bigger than oneself.”

Joseph Campbell

I like to say that I have a front row seat to humanity. I am privileged to meet and share the stories of the most remarkable people and this week’s conversation with Kelli Kelly was so inspiring that I can’t wait to share. Kelli is a real life hero, a woman who went through enormous pain and suffering when her son Jackson was born 16 weeks premature in 2000, weighing a little over a pound. What she did with that experience is a lesson for us all.

Kelli said, “There are defining moments in our lives. Some bring great joy-others sorrow and pain. If we embrace these moments, they can mold us into new and improved versions of ourselves-one that allows us to ignite change, instill hope and find a purpose for our lives we never thought possible.”

In 2000, after the weeks in the NICU (Neo-Natal ICU) Kelli was sad, stressed, traumatized, depressed and emotionally drained not knowing the fate of her newborn son. She said, “The guilt, grief, anguish and pain was overwhelming. Now 17 years later, I can still relate to that defining moment.”  Here are the highlights from our inspiring conversation:

Charity Matters: What was the moment you knew you needed to act and start Hand to Hold?

Kelli Kelly: “When I realized that 1 out of 8 babies born in the United States is pre-term. We started as a March of Dimes Ambassador family but I realized early on that there were  many organizations to support premature babies but nothing to support the families. I was looking for an organization to help me meet other families going through this same stress, isolation and anxiety and there wasn’t one to help us.

So, at first I gathered some families together at our local hospital and created a program, connecting NICU families but it wasn’t enough. In 2008, we began Hand to Hold to provide families a  peer-to-peer support network for seasoned families of premature babies. We knew we needed to give families ways to survive and navigate their time at the NICU and beyond.”

Charity Matters: What fuels you to keep doing this work at Hand to Hold?

Kelli Kelly: First and foremost it is remembering what it felt like to be a parent of a child in the NICU and the impact, trauma, ptsd and stress that causes in all areas of your life. Secondly, it is the cards, the emails from the people we touch. We just started a podcast and are now hearing from families all over the world who are grateful we are sharing with them. Most of all, it is a strong faith in those difficult moments that keeps me moving forward.”

Charity Matters: When do you know that your work has made a difference?

I know we are making a difference when organizations like the Preemie Parent Alliance, realize that parents voices need to be a part of this conversation. When we were the keynote speaker at the National Neonatal Nurses Convention or when I’m speaking to national pharmaceutical companies and their employees about what is happening in this space.

We are truly trying to make foundational changes to help families to be better parents and to not only survive but thrive after this experience.

Charity Matters: Tell us a little about your impact and where you are headed next with Hand to Hold?

Kelli Kelly: We know that our impact and reach continues to expand through our national database that connects these families, through our expanding list of health care partners and because we continue to help break down the barriers to reach families going through this experience.

We started a podcast last February and have had over 13,000 downloads in 42 countries. So we know there is a need and that we continue to reach these families. That was the goal to find, connect and support as many families as we can. Our next steps are to begin our work with “Beyond the NICU” with a book and an App to help families navigate the invisible diagnosis that is a factor with preemies. We will be developing a care map to help navigate families through the process of  first all the way through their child’s education.

To end where we began with Kelli’s inspiring words, “There are defining moments in our lives. Some bring great joy-others sorrow and pain. If we embrace these moments, they can mold us into new and improved versions of ourselves-one that allows us to ignite change, instill hope and find a purpose for our lives we never thought possible.”

Kelli is an inspiration to all with her purpose driven life in service of others.

Charity Matters.

Sharing is caring, if you are so moved or inspired, we would love you to pass the torch/post and inspire another.

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

The heart of football

Last friday was the first day of fall, and with the new season comes a host of familiar traditions. Football, of course, being at the top of the list for most. This year there is a new football tradition that is more than worth highlighting and one that began from one Iowa fan’s idea to help lift the spirits of all of  young patients at Iowa’s Stead Family Children’s Hospital.

What makes this children’s’ hospital so unique is that it is attached to the University of Iowa’s football stadium. Hawkeye fan, Krista Young, who works with young children for a living, had an idea to lift the spirits of these patients. She posted a comment on the Hawkeye Heaven Fans Facebook page that said, “I think with the new University of Iowa hospital addition open, Kinnick should hold a wave to the kids minute during every game. Can you imagine how neat it would be to have all those fans, players and coaching staff looking up at you sending a little extra inspiration?”

Krista’s idea was shared and shared and momentum began to build. Take a peak at what happens when 65,000 people come together to show their love.

We all make a choice each day with what to focus our energy and attention on. Krista Young’s loving heart and selfless idea, not only warmed patients and families hearts, but reminded each of us what is truly important.

The power of what happens, when we come together and show love for others in solidarity, with something as simple as a wave is truly healing.

Charity Matters.

 

Sharing is caring, if you feel moved or inspired, please inspire another…

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

Not on Our Watch….

In the town I grew up in, we have the most beautiful bridge, that was built in 1913. I drive over this bridge almost daily, its architecture and views bring me such joy. The bridge’s most recent fame was being feature in LaLa Land. However, over the years the Colorado Street Bridge has sadly become famous for something much more tragic and that is for suicide. Many locals refer to the bridge as suicide bridge because of the long history associated with it. Seventy-nine people jumped off that bridge following the Great Depression and sadly, many have followed in the years sense.

This month is Suicide Prevention Month. A sad and depressing topic that many do not want to discuss, but the reality is that suicide is the third leading cause of death for people aged 15 to 24. An even more shocking statistic is that 22 Veterans commit suicide EVERYDAY.

Photo credit: Pasadena Weekly

When I heard that a local nonprofit, Wellness Works, that works with veterans healing PTSD, was bringing in hundreds of veterans to patrol The Colorado Street Bridge with a mission of promoting awareness about suicide and veterans, I knew I needed to do the same. For three days, 24 hours a day, in an event called Not on Our Watch, these veterans will walk to hold a vigil to honor those that have died and to offer hope to those that feel there isn’t any.

Today when I drive across that bridge, I will think of those who have so bravely served our country and say a prayer for those still suffering. My hope is that they are brave enough to reach out for help.

Charity Matters.

 

Sharing is caring, if you feel moved or inspired, please inspire another…

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

 

 

Hope and Comfort

In the recent weeks following Hurricane Harvey and Hurricane Irma we have watched the citizens of Houston as they struggle with the most basic of needs, food, water, shelter but one thing we often forget about when discussing basic needs is toiletries. Something as simple as a toothbrush, deodorant or a bar of soap and more importantly the huge effect that not having these basic essentials has on our self-esteem and life.

I recently had a fantastic conversation with a remarkable man named Jeff Feingold, who identified this need in 2010. An unlikely nonprofit founder, with an MBA from Harvard business school and over 20 years working as a portfolio manager at Fidelity, yet his huge heart and overwhelming gratitude inspired the nonprofit, Hope and Comfort in 2010. Their mission is to improve the health and self-esteem of school age children and young adults in the Boston area. His story is one of gratitude, inspiration and hope….

Charity Matters:  What was the moment you knew you needed to start a nonprofit?

Jeff Feingold: It started in 2010 when my daughter was having a birthday party, and my wife and I decided she didn’t need anything but so many other children did. We asked people to bring items needed by a local nonprofit.  We were overwhelmed by the toys, toiletries and clothes that  friends brought to donate. In delivering these items, I met a social worker who shared with me a statistic that 58% of low-income families are unable to buy personal care items. She said, if you don’t have a bar soap it is hard to go forward.

We knew then that we needed to do more and began sourcing toiletries out of our garage. In 2011, we applied for our nonprofit status for Hope and Comfort.

Charity Matters: You have a full-time job and run a nonprofit what fuels you to keep doing this work?

Jeff Feingold: I think the realization that life is short and fragile and there is so much need. We have been blessed but there are so many kids who are not. Children who do not go to school because of their hygiene, that are afraid to smile because they haven’t brushed their teeth, students being bullied because their families can’t afford soap or shampoo, who are refusing to go to school.  Knowing that we are able to bring resources together to change this for so many kids is what keeps us going. That and the need seems to keep growing.

Charity Matters: When do you know that you have made a difference?

Jeff Feingold:  I know we have made a difference when we hear that children are going back to school, when they send us notes saying that they are smiling again. I know that we have been able to thrive in a crowded nonprofit landscape by partnering with food pantries, human services, children’s organizations and bringing everyone together in partnerships creating a distribution network to get these toiletries to those who need them.

We have made a difference in inspiring hundreds of volunteers, young families and young children, including our own on teaching them how to give and make a difference.

Charity Matters: Tell us what success you have had? What has your impact been?

Jeff Feingold: In May 2010 we started with a donating a few items from our daughters birthday party and within the first year of working from our garage we distributed over 1,000 toiletries. By 2014 we partnered with the Boys and Girls Clubs and Mass General Hospital to provide products and hygiene lessons, distributing over 50,000 toiletries. Today, only seven years later we have distributed over 375,000 toiletries to close to twenty thousand children in need. 

As Jeff said, Hope and Comfort has gone from soap to hope…..a shinning example of what love and gratitude can do!

 

Charity Matters.

 

Sharing is caring, if you feel moved or inspired, please inspire another…

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

 

Gordie, a story worth retelling…again and again

Gordie's story

Next week we head to Parent’s Weekend at our son’s college. The weekend will include tailgates, football games and the obligatory fraternity party (parents included). All of it will be fun, nostalgic and take us back to our college days. Thinking of our trip, reminded me that the 13th year anniversary of Gordie Bailey’s death is coming up and while I do not typically repost, I have shared his story every September because the lesson is invaluable and sadly, needs to be told over and over.

So often we do not make discoveries or connections until it is too late.  We do not realize the value of a friend until they have moved away, we do not appreciate our child until they have left for college or we do not know the value of one’s life until it has passed.

Why is it that we wait to make these connections? Why is our hindsight is so crystal clear and our day-to-day vision so clouded? This story is perhaps no different, however, the beauty of it lies in the ability to take that clear vision and create something that matters.

This month thousands of college freshman have left home, including my own son, and many are beginning the process of Rush as they look to make new homes away from home in sororities and fraternities across the country. That is exactly what Gordie Bailey did in September 2004, as an 18-year-old freshman at the University of Colorado at Boulder.

Gordie, a fun-loving freshman who had been the Co-captain of his varsity high school football team, a drama star, a guitar player and a walk on at Boulder’s lacrosse team was adored by all. He pledged Chi Psi and on the evening of September 16th, Gordie and twenty-six other pledge brothers dressed in coats and ties for “bid night”, were taken blindfolded to the Arapaho Roosevelt National Forest where they were “encouraged” to drink four “handles” of whiskey and six (1.5 liter) bottles of wine.

They were told, “no one is leaving here until these are gone.” When the group returned to the Fraternity house, Gordie was visibly intoxicated and did not drink anymore. He was placed on a couch to “sleep it off” at approximately 11pm. His brothers proceeded to write on his body in another fraternity ritual. Gordie was left to “sleep it off” for 10 hours before he was found dead the next morning, face down on the floor. No one had called for help, he was 18 years old.

The nonprofit Gordie Foundation was founded in Dallas in 2004 by Gordie’s parents as a dedication to his memory. The Gordie foundation creates and distributes educational programs and materials  to reduce hazardous drinking and hazing and promote peer intervention among young adults.  Their mission is committed to ensuring that Gordie’s story continues to impact students about the true risks of hazing and alcohol use. As Gordie’s mother Leslie said, “Parents more than anything want their dead children to be remembered and for their lives to have mattered.”

In ten years, the Gordie Foundation which is now re-named Gordie.Org has made an enormous impact on hundreds of thousands of students across the country through its programs and educational efforts. If you have a college age student, think about asking them to take the pledge to save a life, possibly their own.

Why is it that we wait to make these connections? Why is our hindsight is so crystal clear and our day-to-day vision so clouded? Why is it that we do not know the value of one’s life until it has passed? Perhaps more than a decade later, our vision is becoming clearer and we realize just how much precious each life is……

Charity Matters.

 

Sharing is caring, if you feel moved or inspired, please inspire another…

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

What we can do….

This week was supposed to be about back to school, but somehow it just didn’t feel right when thousands of Texans are suffering from the aftermath of Hurricane Harvey. So rather than talk about beginnings, it seems more appropriate to talk about what happens when people come together in times of crisis to help one another and what we can do to help the 6.8 million people affected by these storms.

Texas Monthly, provided this amazing list of ways we can help those in Houston and I thought it was worth sharing here, with a variety of ways to help children, families, the sick, disabled and animals.

The Texas Diaper Bank  Each year The Texas Diaper bank helps change the lives of 15,600 babies, seniors and the disabled. They distribute over 1.1 million diapers every year.

Driscoll Children’s Hospital  The hospital served over 171,000 children last year and is in need of blood donations as well as financial support during this challenging time as the staff works to serve these children and families.

Port Light This nonprofit is a grassroots organization that was established in 1997 to help those affected by disasters, specifically those with medical equipment needs and disabilities. Since that time, the organization has grown and in addition providing disaster emergency services, they spend much of their time educating others how to be prepared.

Direct Relief USA  This organization operates the largest charitable medical program in the United States serving more than 23 million Americans each year. 72% of those served live under the poverty level in the  United States. They are working to provide medicine and medical care to those people evacuated from their homes and in need.

Houston Food Bank In 2016-2017 The Houston food Bank distributed over 83 million meals! That was before Hurricane Harvey. With thousands and thousands of people living in shelters the Houston Food Bank is in desperate need of support to feed so many additional families.

Galveston County Food Bank  was founded in 2012 to provide meals to Houston’s surrounding area and helps to provide food and meals to over 53, 000 people each day who struggle to feed their families. They need your support to help so many more during this crisis.

Global Giving  is the largest global crowdfunding community connecting nonprofitsdonors, and companies in nearly every country. This organization helps nonprofits from Afghanistan to Zimbabwe (and hundreds of places in between) access the tools, training, and support they need to be more effective and make our world a better place. Their goal is to raise over 2 million dollars towards the Hurricane Harvey Relief effort.

SPCA of Texas is overwhelmed with need to rescue, care and support the thousands of animals effected by Hurricane Harvey. They annually help over 50,000 animals each year in addition to the seven thousand they spade/neuter and the other seven thousand animal cruelty investigations each year. The SPCA needs your support to rescue and care for the thousands of pets affected by the storm.

Aesop said, “In union there is strength.” This is the time we need to stop, click a link and help those who need it most, I just did……because together we can really do something.

Charity Matters.

 

Sharing is caring, if you are so moved or inspired, we would love you to pass the torch/post and inspire another.

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

Two blind brothers…

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.

 

Charity Matters.

 

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

The Clarity Project

 

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.

 

Charity Matters.

 

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

Once Upon a Room

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?

Jennifer Hull:

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.

Sienna, Josie and Ford

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 the person 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.

 

Charity Matters.

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

A significant life

“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.”

 Michael Josephson

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.

Charity Matters.

 

 

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

And the beat goes on….

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…

 

Charity Matters.

 

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

Mothering

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.

 

Charity Matters.

 

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

Matters of the heart

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.

 

Charity Matters.

 

Copyright © 2017 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.