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The Butterfly Child

Every so often a rare magical beam of light enters our world, makes it brighter, shines an internal light so brightly on something important and then leaves this  world a little darker when it goes. This past week that is exactly what happened when the world lost 17 year old Jonathan Pitre, on April 6th.

Jonathan Pitre was known as “Butterfly Child” because of the rare disease he had called Epidermolysis bullosa, which makes the skin as fragile as a butterfly’s wings. The disease also known as EB, is often referred to as one of the worst diseases known to modern medicine . The reason is that the slightest scratch or blister results in wounds similar to third degree burns and children living with EB are in constant pain because the skin never heals properly.


PHOTOGRAPH BY George Harrold / Barcroft Media

However, that pain became a source of strength for Jonathan whose mission was to raise awareness and  funds for the disease. Jonathan became an ambassador for Debra, the nonprofit organization dedicated to helping support families with EB.

The world first met Jonathan a few years ago, when James Duthie, did a documentary film called The Butterfly Child which told the story of this amazing young man and the life he and his mother experienced living with this disease.

James Duthie, said about Jonathan, “What really made him proud was to be able to draw attention to the disease, to raise money for it, to educate people on a disease that nobody really knew anything about except the families that were living with it. I’m thrilled he got to do that in his last few months because it really gave him purpose. I think that brought him a lot of peace in his last months.”

Jonathan’s positive nature, determination and sense of purpose made him an inspiration to all. The world will be better because he was here and not quite as bright without him. His mother said in a statement on Facebook, “Jonny’s story has been made very public over the last years as he invited you into his life and daily struggles with EB, as he tirelessly fought to raise awareness for this horrific disease. I am proud to say you did Jonny boy!”

charity matters.

 

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Copyright © 2018 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.

Warrior of The Light

First, I wanted to say welcome back to all our email subscribers, we have missed you! Thank you for being patient, as they say good things are worth waiting for. While I wish I had an incredible interview lined up for you today, I am still taking some much needed vacation time to decompress from my day job of running a nonprofit but promise to be ready to roll next week!

Spending a few days in the desert to relax, unplug and rejuvenate. I don’t think I realized how tired I was until I stopped for a moment to take a pause. As I mentioned on Tuesday, I started reading an incredible book  by one of my favorite author’s, Paul Coehlo. The book is called Warrior of The Light: A Manual. I’m not sure if you would call it a how to guide to life but I can’t put it down.

In the book he discusses our call to be Warriors of the Light for ourselves and to others. To follow our path, our dreams, to listen to our souls and to be relentless in living our purpose. One of the thousands of messages that resonated and needed to be shared was this, ““The Warrior, however, transforms his thinking into action. Sometimes he chooses the wrong goal and pays the price for his mistake without complaint. At others, he swerves from the path and wastes a great deal of time only to end up back where he started. But the Warrior never allows himself to be discouraged.”

As I have been slow this week and in a self reflection mode, I thought this message was important for all of us to hear. Sometimes, we work so hard at something and it doesn’t go the way we expected but it is in persevering that we prevail. Something that I think we occasionally need to hear, keep dreaming, keep doing and keep moving forward on our paths.

So as I recharge, rest and contemplate next steps, I wish you a fantastic weekend and looking forward to moving forward with each of you next week!

charity matters.

 

 

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Copyright © 2018 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 camp with heart

While I know it is February and summer and camp seem to feel like a million years from now, I had an incredible conversation last week with an amazing human named Lisa Knight, who runs a camp (Camp del Corozon) for children who are living with heart disease. Since February is National Heart month this seemed like the perfect time to discuss our mutual challenges of running nonprofit camps but more specifically Lisa’s incredible work as a registered nurse and nonprofit founder, serving children with heart disease. I hope you enjoy our conversation half as much as I did.

Charity Matters: What was the moment you knew you needed to start Camp Del Corozon?

Lisa Knight: In 1995, I was working with Dr. Kevin Shannon with pediatric heart patients and we had a mother who came in to see us. Her son had multiple heart surgeries and was depressed. He didn’t want to go to sleepover or PE class because he was embarrassed about all of his scars and he didn’t feel like a “normal kid.” I suggested to Dr. Shannon that maybe we should try to send him to camp and began to look for a camp that could manage his health challenges or that would take him. There was only one, it was very far away and very expensive. So I suggested that we try to create our own.

Dr. Shannon loved the idea. I reached out to my friends in Catalina that had a camp and asked if we could come for a week with some heart patients, they agreed. We asked all our doctor and nurse friends to volunteer and within two months we had 49 heart patients and 100 volunteers coming to camp for free.

Charity Matters: What challenges did you have?

Lisa Knight: We had NO money, We maxed out credit cards, were not totally sure what we were doing but we were sure we should be doing this. Then we had a surgeon named Jerry Bucklin, who gave us $5000 to make it happen and we did.

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

Lisa Knight: I get so filled up by it all.  These kids have survived death, there are not camps for these types of kids due to their medical conditions. It transforms them. You see them show each other their scars. The most rewarding thing is when you hear children call you by your camp name, when you see them years later not at camp.  This year our first camper is coming back as a counselor, so to see not only these children grow up and give back but to watch my own 29-year-old daughter getting even more involved as she takes on more responsibility with her role at Camp del Corozon, is so rewarding. 

Charity Matters: Tell us about your successes at Camp del Corozon?

Lisa Knight: I think our successes is that thousands of children have been able to come to camp, to make friends, become more confident and just feel like regular kids.I think back to when we began and am so proud that it is continuing and going on. I get joy out of all our success, each child, each camp. This summer we will have close to 400 campers who will come to camp for free. Twenty-three years later that feels pretty amazing.

Charity Matters: What life lesson have you learned from this experience? 

Lisa Knight: I’ve learned so much, how to dream dreams, connect the dots and make things happen. I have learned gratitude after having so many struggles and I have learned that there is nothing better in life than service, you simply cannot be happy without it.

Charity Matters: How has this changed you?

Lisa Knight: I feel that Camp del Corozon was just supposed to be. This is my whole life. I feel that I am on a chess board and God just pushes me in the direction I am supposed to go.”

Charity Matters.

 

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

Copyright © 2018 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 Will Matter

what-will-matter

I think the first week of January we are all in a bit of a post holiday haze. Trying to dig out from under the decorations, put away last year and try to get our head around the New Year. So much for us to process. I was looking at some old posts and came across this, which I posted exactly a year ago. One year later it still resonates as I begin to look at what 2018 can be and what is truly important in a life well lived.

This is the starting point for my New Year’s resolutions, hoping it helps you with yours…

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What Will Matter

By Michael Josephson

Ready or not, some day it will all come to an end.

There will be no more sunrises, no minutes, hours or days.

All the things you collected, whether treasured

or forgotten, will pass to someone else.

Your wealth, fame and temporal power will shrivel to irrelevance.

It will not matter what you owned or what you were owed.

Your grudges, resentments, frustrations and

jealousies will finally disappear.

So, too your hopes, ambitions, plans and to-do lists will expire.

The wins and losses that once seemed so important will fade away.

It won’t matter where you came from or what

side of the tracks you lived on at the end.

It won’t matter whether you were beautiful or brilliant.

Even your gender and skin color will be irrelevant.

So what will matter?  How will the value of your days be measured?

What will matter is not what you bought

but what you built, not what you got but what you gave.

What will matter is not your success but your significance.

What will matter is not what you learned but what you taught.

What will matter is every act of integrity,

compassion, courage or sacrifice that enriched, empowered

or encouraged others to emulate your example.

What will matter is not your competence but your character.

What will matter is not your memories but the

memories of those who loved you.

What will matter is how long you will

be remembered, by whom and for what.

Living a life that matters doesn’t happen by accident.

It’s not a matter of circumstances but of choice.

 

Choose to live a life that matters.

 

Charity Matters.

Copyright © 2018 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.

 

We are one

Have you ever heard a song that spoke to your soul? A song that expresses exactly where you are in a moment, that feels as if it is reading your mind? It doesn’t happen very often for me and perhaps being new to Satellite radio…I was so inundated with noise that I never really listened.

Last week, I was driving to a meeting and this song came on and spoke to me. One line in particular grabbed my attention, the line was “Heroes don’t look like they used too….they look like you do.” That line is so true….because each week I am privileged to meet and bring you these amazing heroes…people just like you me. People that care deeply, have a passion for making our world better and reminding us that we are all the same and that We are one.

As you begin your weekend and Cinco de Mayo celebrations, remember there are Alternate Routes to take (the bands name) and know we are love, we are one, we are how we treat each other when the day is done.

 

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.

800….who would of thought?

In 2011, I had a dream. A dream to tell the stories of people who inspire me, who make our world better each and everyday and who are truly unsung heroes…non-profit founders. This dream, woke me up in the middle of the night and was so real that I wrote it all down. That dream became Charity Matters.

No matter what has been happening in my life, good or bad, I have not given up on that dream. I interview, I write and I search for these people and their organizations out in every spare minute I have. A strange hobby perhaps, but it has become my mission, a daily reminder of gratitude, perseverance, the joy of giving and my purpose.

As Leo Rosten said,”I cannot believe that the purpose of life is to be happy. I think that the purpose of life is to be useful, responsible, to be compassionate. It is, above all to matter, to count, to stand for something, to have made some difference that you lived at all.”

So today, I take a small pause to recognize the 800th post and to thank you for being here with me along for the ride. I am beyond grateful for each of you, your friendship, loyalty and generosity in sharing these posts and spreading the word that 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.

Extraordinary destiny

Each week I meet, interview, and discover the most amazing people, whose stories I share here.

What makes them extraordinary, is what each of them does with the hand they were dealt. The choice that they made to turn something negative into something positive.

The singular thread is that these remarkable people will do anything to ensure that the next person that comes along who is dealt that same hand, now has the resources that they did not.

It is a privilege to get to know these people, to tell their stories and to share them with each of you.

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 beautiful picture

pablove-org

On Sunday night I curled up on the sofa for one of my favorite TV nights of the year, to watch The Golden Globes.  Unlike the Academy Awards, this show feels like you are at a party you were invited to. So when I saw this story on last night’s news, about the Golden Globes and an amazing non-profit’s photography program, I had to share….  especially since this week was already devoted to photography and how it makes our world better.

In 2008, when Jo Ann Thrailkill and Jeff Castelaz’s son, Pablo, was diagnosed with a rare childhood cancer they wanted three things; to fund research for a cure, to help educate families dealing with cancer and to improve the lives of children living with cancer through the arts.  Pablo lost his battle at only six years old but his family was determined to help others and in 2009 began the Pablove Foundation to continue their mission.

So what does this have to do with the Golden Globes you ask? Well, one of their programs is called Pablove’s Shutterbugs and the goal is to give pediatric cancer patients a new perspective through the lens of the camera, in order to learn to express themselves and find  a new way of seeing things. Well one of these little shutterbugs was the cutest paparazzi on Sunday’s Red Carpet, take a peek…

Pablo’s legacy lives on in the over 1,000 students who have been reached through Pablo’s Shutterbug program since 2011. The foundation has funded over 19 research institutes worldwide with over 1.9 million dollars given to find a cure. Now that is a picture worth smiling for.

 

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 little Christmas magic

a-little-christmas-magic

The other day, I wrote about being present to witness the joy and miracles that are all around us this holiday season. No sooner had I finished that post, when I received an email which had been forwarded to me. The email came from a woman named Jamie to her friend Steve.

Jamie wrote to Steve telling him that she would be going home to Philadelphia for the holidays and would be visiting an elderly nun, named Sr. Helen, who had been a wonderful influence on Jamie in high school. Sr. Helen was elderly and now had no family left and would be alone on Christmas.

Jamie remembered that Steve’s daughters attended a sister school in California, where Sr. Helen had worked years ago. Her request was simple, was there anyone at the school who might have remembered Sr. Helen and who would be willing to write a note or a Christmas card? The only Christmas gift that Jamie knew would touch Sr. Helen’s heart and remind her of all she had done for so many over the years.

I received the email and immediately forwarded it to the sister school, where I am an alumna. Within moments, a reply all came back from an angelic woman, named Angela.  Angela would be thrilled to spread the good word and pull together messages of love for Sr. Helen to be delivered on Christmas day.

One woman’s kindness, sparked another’s and another’s and the result will be pure Christmas magic for an elderly woman who will be reminded that she is not alone but rather the spark to a flame of goodness. Pure Christmas magic…..

 

Charity Matters.

 

Copyright © 2016 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.

 

Are you hungry?

LA food bank tonyimageThe power of one is a concept that always intrigues me. How can one person create so much change? How can one idea create something that feeds one million people a year? The thought is humbling, empowering and pure inspiration.

The “one” I am talking about is a man named Tony Collier. He was a cook who saw leftovers going to waste and decided to do something about it. Sound simple enough? As a cook, for a Los Angeles based non-profit, Tony received more donations than he needed.  So, he decided he needed to share his leftovers with other charities that were trying to feed the hungry as well.  Tony had heard about a food bank in Phoenix that had done something similar and decided to bring that model to Los Angeles and founded Los Angeles Regional Food Bank in 1973.

From the very beginning the 200 square foot garage quickly filled up and soon had to move into a converted 2,600 square foot dry cleaning facility in Pasadena. By the early 1980’s Tony’s simple idea was distributing more than 3.5 million pounds of food to over 70 different agencies in LA.

[youtube=http://www.youtube.com/watch?v=Kt6QJobSbww]

Today, The Los Angeles Regional Food Bank distributes 51 million pounds of food or the equivalent of 42.4 million meals. The LA Food Bank served over 1 million people last year with the help of 32,000 volunteers.

One man’s simple idea is no longer housed in a garage but now resides in a 96,000 square foot facility that distributes the food to over 653 different agencies throughout the LA area. One man, one idea and a legacy of compassion that continues to inspire.

Charity Matters.

  Copyright © 2013 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.

Why I write

writingEach week I sit down at my computer and write. Sometimes its a story about an incredible person who shaped our world and made an impact, other days its simply a quote or a thought that I feel compelled to share with you. And some days I wonder why? Why do I feel so compelled to do this?

Since I’m in the sharing mood, I think there are a few reasons that I write. First and foremost, at my core I am a communicator. Whether its my motor mouth, or talking with my hands or through these keys, it is simply who I am.

More than that, I write to remind myself of who I need to continue to strive to be and become. I write about my heroes, people who have taken a problem and turned it into a solution that impacts thousands of others in incredible ways.

Writing broadens my world and brings people and situations into my life, in ways I never imagined. Charity Matters has given me such purpose and my hope is that is has brought some to you as well. As I say every week, we all have gifts. Finding those gifts, recognizing what they are and sharing them in ways to make our world better is just simply what it’s all about.

Charity Matters.

Copyright © 2013 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.