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Health

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A fight song

Photo via:ABC News
Photo via:ABC News

The other day I went to the dentist for my annual appointment. My dental hygienist, who has become my friend over the past decade of having my mouth held captive, did not look like her usual perky self.  I only see her twice a year but she somehow feels like a dear friend every time we visit. I asked her about her children who are the same age as mine and as the tears began to flow, she shared that her college age son was just diagnosed with cancer.

I came home devastated and in shock at how quickly lives are altered by the words, “You have cancer.” As I scrolled through Facebook as a distraction, I came across this and felt compelled to share.

Having spent over a decade at Childrens Hospital Los Angeles, supporting families in crisis, this spoke to me on so many levels. Coincidentally, September is Childhood Cancer Awareness Month.  Life can change on a dime, one never knows and it is the power of love, compassion and a fight song that makes it all worth the fight.

Charity Matters.

 

Copyright © 2015 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.

For Max

For max

As many of you have read here, Max Paige (aka Little Darth Vadar) and his family have become dear friends of Charity Matters. Max was born with a congenital heart defect and over the course of the last 10 years has had 9 surgeries. This week Max will undergo yet another surgery on his heart.

His mother Jennifer said, “When Max was an infant, he had an incredible will to live. At age 4, he asked how much surgery would hurt? At 7, he wanted to know why he needed to go through with this and now at 10 he is keenly aware of time and how precious it is.”

Max and his family have used his celebrity and innate goodness as a platform for so many wonderful causes. He is wise beyond his years and he and his brother are two of the most philanthropic young people I have ever had the privilege of knowing, thanks to their inspiring parents.

This is his theme song for the next leg of his journey and I wanted to share it all with you, in hopes that you can send a prayer or kind thought his way in the next few days and weeks.

Max as always uses his experience to make others lives better, even at the tender age of 10. His hope is that if someone is inspired to do something because of his journey, that they would consider supporting a place that has given him so much and become a second home, Children’s Hospital Los Angeles and the Heart Ambassadors program. Max here is to you and the good fight!

Charity Matters.

The gift of life

 

“To know even one life has breathed easier because you have lived. This is to have succeeded.”

Ralph Waldo Emerson

The gift of life

With birthdays come drivers license renewals and the question of whether or not to put that pink sticker on my license indicating that I am an organ donor. For me the answer is simple, yes I am.  I am an organ donor because I have heard the helicopter on the roof of Children’s Hospital bringing the precious gift of life to a child.

I am an organ donor because I have watched to family friends suffer while waiting for a donor. The first friend, needed a heart transplant. He received a heart from someone who had died at the craps table in Vegas. He told me once he had his new heart, he unexpectedly found himself wanting to go to Vegas, but wouldn’t dare go by the tables. His new-found spirit was infectious.

Another dear friend of ours, and a young father of two, waited for a kidney for what seemed like an eternity. To see this vibrant man dwindle was devastating for all of us who adore him. When it seemed grim, a miracle occurred. Another’s passing gave the gift of life to our friend and he is thriving. When I saw this video I thought of both our friends.

I will be putting a new sticker on my license stating I am organ donor. I will tell my family, so that they know my wishes and you have this post as a back up. I think Emerson simply said it best, “To know even one life has breathed easier because you have lived.”

Charity Matters.

 

Copyright © 2015 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.

Without words

without words

I have to say that in almost four years of blogging, I have rarely been at a loss for words. I sat down to write the other day and there just wasn’t anything there. I mentioned this challenge at our family dinner table and my sons said, “You don’t have to write Mom, its ok if you take one day off.” A thought that truly had never occurred to me.

I had resigned myself to the fact that with two graduations next week and a very full plate at work, I would take today off.  However, the universe had different plans, no sooner had I made that decision, when a friend sent me this video…which of course I needed to share with you.

Tired or not, seeing compassion in action, simply never gets old. It is moments like these that inspire me to do more, give more and use my time showing the world that it is actions not words, that really matter.

Charity Matters.

 

Copyright © 2015 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

World Wish Day: Make a Wish Foundation

(Photo by Trisha Leeper/WireImage)
(Photo by Trisha Leeper/WireImage)

Today is World Wish Day. World Wish Day is organized by Make-A-Wish to commemorate the anniversary of the wish that inspired the creation of what is now one of the world’s leading children’s charities. Seven-year-old Chris Greicius’ wish to be a police officer was granted in Phoenix, Arizona by volunteers on April 29, 1980.

The Wishes give these children and families something to look forward to, to dream of and a slice of hope. One of my favorite wishes was the little boy from the Bay Area that wanted to be Batman. Never underestimate the power of a wish.

Since Chris’ wish in 1980, more than 300,000 children around the world have had their fondest wishes fulfilled by the Make-A-Wish Foundation. Make A Wish Foundation’s mission is to “enrich the human experience with hope, strength and joy.”

Every 37 minutes, Make-A-Wish grants the wish of a child with a life threatening medical condition somewhere in the world. Today the Make-A-Wish is active in 35 countries. All of this began, with just a simple wish.

Charity Matters.

Let it Be

ruth and karla rosen, let it be

Just hearing the words, Let it be I begin to hear the song..speaking words of wisdom, let it be…let it be. Sometimes letting it be is the most difficult thing of all. Those words were the singular wish of a young girl named Karla Rosen who was diagnosed January 7th, 2005 with a rare brain cancer. Her heartfelt desire was to “just be.”

During that year, their community rallied around their family to take care of meals, Karla’s two siblings, yard work, and all of life’s task that shift in the wake of a child’s health. The community support was overwhelming, wrist bands were made and sold to help pay the medical bills. After a year of fighting this horrible disease, Karla Rosen lost her battle with cancer on February 5th, 2006. She was 15 years old.

Her parents, found a letter in her room shortly after her death that said, “I have only known two other people with my condition: one passed away, and one has been struggling for life in the hospital for many months. I now know, because of what I am able to accomplish once again, what miracle God wanted me to pass on – the miracle of life. Thanks to my cancer, I now do not sweat the small things in life and live it to its fullest.”

With the help of the community, within months of Karla’s death, her family decided to celebrate what would have been Karla’s 16th birthday with the creation of the Let it Be Foundation.  Their mission is to provide ongoing support and services to families and children diagnosed with life threatening illnesses throughout the child’s treatment, with a focus on the entire family.

The Rosen family has taken their unbearable loss and turned it into a legacy of compassion for others. As the song says, “there will be an answer, let it be…let it be…..”

 

Charity Matters.

 

Copyright © 2015 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.

Walking Strong Foundation

Llauro Family, walking strong foundation

A few months back my sister-in-law emailed me to tell me about a conversation she had with her childhood friend, Valerie. who was starting a foundation. In 2011, Valerie received some extremely sad news that her then, seemingly healthy 5-year-old son was in fact, not healthy and was diagnosed with Duchenne Muscular Dystrophy.  What began with sore leg muscles was in fact a disease that is the most common fatal, genetic childhood disorder, which affects approximately one out of 3500 boys each year and has no cure.

Valerie and her husband Jorge were told that most Duchenne boys are diagnosed between the ages of 3 and 5 and are in a wheelchair between 10-12 years old. The disease is associated with respiratory failure, heart failure, and debilitating orthopedic complications. Up until just few years ago – upon a diagnosis of Duchenne, neurologists offered no hope for the families and told them just go home and love their boys as long as possible. Most Duchenne boys die in their late teens and twenties. The worst of all there has never been a survivor.

However, after grieving and processing this incredible news  The Llauro Family decided to get to work in search of a cure. After learning about some breakthrough treatment drugs that are being developed which may be available soon, they decided to create the WalkingStrong Foundation to dramatically increase Duchenne awareness and support scientists in funding their research.

They said, “We are determined and hopeful that our son, Alexander, continues WALKING STRONG.  We founded Walking Strong to solidify our determination and commitment in making our son and other Duchenne boys – the first ever survivors. Duchenne parents are living on a time clock. As most parents make plans and look forward to their children’s future, Duchenne parents, fear the future. We fear what lies ahead for our boys. The time is now, for breakthrough treatments for these boys

Charity Matters.
Copyright © 2015 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 Oscar goes to….

the oscar goes too

I have to admit that I love the Academy Awards, it is my Superbowl Sunday. While we all love to see the celebrities, the red carpet fashions and the after parties. What we don’t always realize is how many fundraisers and charitable events these stars have been supporting this past week.  There were more than a few winners before the academy awards even began….

It kicked off last Wednesday with a Vanity Fair event to support Oxfam, an organization that addresses the elimination of global poverty. Thursday was a A lister’s event called Unite4Good, which honored celebrities for their philanthrophy…who knew? Hallie Berry received an award for her work with the domestic violence non-profit the Jennesse Center, Jeff Bridges for his work with No Kid Hungry and Ewan McGregor for his commitment to Unicef.  Friday, celebrities dashed to an Alfa Romeo luncheon in support of the non-profit Girl Rising. By Saturday, it was time for the big Night Before Party in support of The Motion Picture and Television Fund That was simply the week before!

Last night, the biggest fundraiser was Elton John’s Annual Aids Foundation Dinner which has raised more than $321 million for the treatment and prevention of HIV/AIDS since its inception in 1992.  So while we all wanted to hear from the winners, the real winners of last nights Academy Awards were the incredible causes that benefitted from all that star-dust.

 

Charity Matters.

Max Page and his Force

max page, the force

As millions of us watched the Super Bowl yesterday and of course those very pricey ads. I thought it might be worth revisiting the one of my favorite philanthropic friends. His name is Max Page and you might remember Max from his starring Super Bowl ad as Darth Vadar, a few years back.

Max has been a patient at Childrens Hospital Los Angeles  many times in his short life for multiple heart surgeries.   I met Max and his family, a few years ago, as we worked together to launch the Junior Ambassador Program at CHLA . The Page family are some of the most philanthropic people I know, and have used their situation and celebrity to the benefit of others time and time again.

Last week Max revisited his friends on the Today Show but didn’t get to share what he is up to these days. Max continues his acting and his passion for philanthropy, At the wise old age of 10 he is a spokesperson for the non-profit GenerationOn.Org which inspires children and teenagers to get involved in making a difference. Max’s heart may have been defected once upon a time, but today it is his heart and use of the Force that continues to inspire us all.

Charity Matters.

 

Copyright © 2015 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.

To live like you are dying

live like you were dying

What would you do if you were told you had just a few months to live? I’m not sure any of us really know that answer. We may think we do but our lives are simply too busy to think about such morbid thoughts, until we are faced with such a moment.

We all rush through life as if  it is a race, a place where someone wins and yet life isn’t about any of that. It is the moments with ones we love, the beauty all around us and in finding joy in the things that matter.

That is the choice that Brittany Maynard made when she was diagnosed with terminal brain cancer. She chose to live and to choose the day of her death as well. Her story and her message is as much about life as it is about death.

There isn’t much to say that hasn’t been said right here but when you see something like this story, it causes you to pause, to cry and to shift. With treatment, the disease’s median survival time is around 14 months, meaning that half of those live for longer than 14, and half live for less. Brittany was given six months. Doctors explained that her death would be slow and painful as her tumor grew — a worsening progression of headaches, nausea, vomiting, weakness, and seizures. Brittany wanted to use this a starting point for a conversation, she did that with The BrittanyFund.org

As she said, “Seize the day, the world is a beautiful place, travel has been my greatest teacher, my close friends and folks are the greatest givers. I even have a ring of support around my bed as I type … Goodbye world. Spread good energy. Pay it forward!”

Brittany chose to live her life on her terms, to use her experience to help others understand and to live like she was dying. Godspeed Brittany.

Charity Matters.

 

Copyright © 2014 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.

TCU Frogs for a Cure: Follow Up

photo via: WestFWlifestyle.com
photo via: WestFWlifestyle.com

The main reason that I ended up in Texas last week was because of a remarkable woman named Ann Louden. You may recall that I met Ann through Charity Matters a few months back when she came to Pasadena to film a video at the Rose Bowl for her non-profit, TCU Frogs For a Cure.  She is dynamic, compassionate and determined to eradicate breast cancer.  She is a woman on a mission and she has the state of Texas cheering her on. It is no wonder that Texas is the home of The Susan G. Komen Foundation because these women make change happen.

The official video will be debuted later this month at the TCU Frogs for a Cure benefit with Former First Lady, Laura Bush.  I wanted to share a little piece of Ann’s story and passion because it is the story of thousands of women across this country.

Ann is a role model of what being Brave is all about and her passion is contagious. She has taken adversity and turned it into inspiration. As TCU Frogs for a Cure celebrates their 10 year anniversary, I am inspired by the continuing message of hope they bring to so many truly brave women.

Charity Matters.

 

Copyright © 2014 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.

Caring for the Caregiver: CAN

caring for the caregiver

The other day, I mentioned my friend, who has an adult child that is ill. This recent change of events has put her in a role that millions of us find ourselves in each year, becoming a caregiver. Whether it is an aging parent, a sick family member and or everything in between. The question becomes, who cares for the caregiver?

This was a question asked by two friends, Suzanne Mintz and Cindy Fowler, over twenty years ago. The two were discussing their similar roles with Suzanne caring for her husband with MS and Cindy caring for a mother with Parkinson’s. Their conversation led to the realization that there must be others in the same situation. They were right, it turns out that there were 65 million caregivers in this country.

The two made it their mission to provide support to others who may not know how to reach out for help and who did not even know the phrase “family caregiver.” The result was their  founding the National Family Caregivers Association (NFCA) in 1993. “Our original vision was to get information and resources into people’s hands and to let them know they weren’t alone,” according to Fowler.  NCFA focused on providing a voice for caregivers that would enable them to speak up and get the help they need.

As Suzanne Mintz recalled: “We wondered why no one seemed to be focused on the fact that helping a loved one with a deteriorating illness had a very real impact on not only the person with the illness, but also on those of us who were primarily responsible for helping them.”

For the celebration of the National Family Caregivers Association 20th anniversary, they renamed their non-profit to the Caregiver Action Network or CAN. These two women took their challenges and turned them into an awareness, a non-profit and a movement to inform each of us that family caregiving is a lifespan issue, not one restricted to the aging community.

They are an inspiration and their newly named organization CAN, simply says it all.

Charity Matters.

 

Copyright © 2014 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.

Philanthrophy for kids

Philan for kids, jr ambass

It seems that since this month is all about back to school and starting the new year off on the right foot, that it is a good time to talk about ways to incorporate philanthropy into the school year.  This is the perfect time of year for goal settings and planning ahead, especially for young students.

A few years ago, it became very clear to me that todays students are incredibly busy. As a result, it is very hard for them to find time to give back and yet they have so much to give. My middle son is a high school football player and has very few hours in the day but wanted to make a difference. I was involved at Childrens Hospital Los Angeles and wondered if there was a way to bring busy students and a great cause together? The answer was yes. The hospital had been thinking the same thought and when a few of us got together we helped create something called the Junior Ambassadors for CHLA.

What they do is simply have the kids use their skills, whatever they are, to help another child. My son is a quarterback so he throws touchdowns for sponsorship and has raised thousands of dollars for the hospital. He calls it Scoring for CHLA. Another Junior Ambassador is a gifted photographer who sells her work to help CHLA. Some ambassadors have lemonade stands, others throw parties and everyone pitches in to use their talents for an amazing cause.

 

September is a perfect time to continue or start the conversation with your children about giving back. You will be amazed and surprised of what they have to offer. Beginning to discover their talents and learning to share them with the world is a beautiful gift for everyone.

 

Charity Matters.

 

Copyright © 2014 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.

Where does a movement begin? The Ice Bucket Challenge

ice bucket challenge

How do trends start? What was the impetus to all of us dumping buckets of ice water on our heads? Who was the inspiration behind this chilly trend?

The answer is simple. His name is Pete Frates and this is his story.

So the next time you are looking at Facebook and/or pouring a bucket of ice on your head, remember why you are doing and for who.  You are doing it for Pete Frates and everyone else who has ALS.  The trend that is changing the face of ALS belongs to one face only and that is of Pete Frates…. an inspiration to us all.

Charity Matters.

Copyright © 2014 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.