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Health

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A mother’s legacy of Hope

inheritance of hopeThe other day I received the sad news that a high school class mate of mine had died from cancer at the age of 47. She had battled the disease for almost half of her life. Stephanie, was an only child and a single mother. Upon reflection of her life, I began to wonder what the journey was really like for her and her beautiful daughter.

That lead me to uncover a fact that there are over 700,000 children each year who deal with a parent that has life-threatening cancer. In this discovery, I came across a remarkable woman named Kristen Milligan, who walked a similar path to my friend, as a parent who was ill, and looking for ways to help her family.

In 2003, when Kristen was diagnosed with a rare terminal illness her children were only four, two and seven months.  She wanted to find a great book that helped explain her illness, when she couldn’t find it, she wrote her own.The book was called  A Train’s Rust, A Toy Maker’s Love, the story of a train family whose mother begins to rust, prompting questions of the toy maker about what will happen next. Kristen and her husband Deric, then expanded their mission to help other families dealing with serious illness and in May 2007 began the non-profit Inheritance of Hope.

Their mission was to improve the well-being in the lives of children and families, dealing with a parent diagnosed with a life threatening illness.  They achieved that goal by providing books, family retreats and support that was spiritual, emotional and financial. The Milligans believed that the more the family is helped, the more it helps the ill parent.

Kristen endured her disease for nearly ten years, including six surgeries, twenty-two months of chemotherapy, two rounds of radiation, and two more books. She died on October 26, 2012 and her legacy of hope lives on in every life she continues to touch.

Charity Matters.

 

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Big moments in small packages

jeffrey, loyolaThere are so many ways our lives touch others. It seems that the big moments that touch us often come from the littlest people. Last friday night my son’s football team had their first scrimmage. Lined up in crisp new uniforms were 86 big varsity high school football players and in the front of team stood a 9-year-old boy. The 9-year-old is our new team captain. His name is Jeffrey and he is teaching our football team about courage, toughness, perseverance, dedication and overcoming adversity.

Jeffrey knows about these traits because he has cancer.  Less than two years ago, he was a typical 8-year-old boy who loved playing baseball and flag football and then everything changed. Jeffrey was diagnosed with DSRCT (Desmoplastic Small Round Cell Tumor), an extremely rare and aggressive cancer.  In just over a year he has completed about a dozen rounds of chemotherapy, five surgeries, numerous procedures and five weeks of radiation therapy.

In honor of our mighty new captain, the team will wear Jeffrey’s initials on their helmets this season in honor of his courage and tenacity, as well as to bring much-needed attention to the lack of funding for pediatric cancer research.  Jeffrey  received the signed game ball and his very own football jersey with the number 11, that represents the date of his diagnosis, 11/11/11.

This little package has already showed our sons how to be strong, courageous, and to face adversity with a smile and can do attitude. Jeffery’s family has a web-site and the quote on the site reads, “Let your dreams be bigger than your fears, your actions louder than your words, and your faith stronger than your feelings.”

We have yet to play our first game but it is already a winning season.

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.

World Health Day, a day late.

World health day 2013Okay, so I know I am a day late on this one. Like many of you, I just got back into town from Spring break, so I am a day late. Yes, yesterday (April 7th) was World Health Day but just in case you missed it, like me, then I think it’s never too late to learn something important, even life saving.

WHO or the World Health Organization was started by diplomats from the United Nations on April 7th, 1945 and ever since we have celebrated World Health Day on that day….except today of course:)

Each year a different topic of international health is chosen and this year’s theme is blood pressure. I have to say after spring break and getting into some bad habits in a few short days, this message is more relevant than ever.

[youtube=http://www.youtube.com/watch?v=aIiYLY-Wyx0]

So enjoy World Health Day and remember it’s never to late to take of yourself or someone you love, even a day late!

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.

SADS

SADS girlI think I mentioned that heart disease is a very personal cause because it has affected my family for decades. Did I ever mention that my Dad has “died” more than a few times? Well, he has and his last episode was caused by SADS. Thankfully, he is one of the rare lucky survivors due to a defibrillator close by.

A horrible sounding name,  that conjures up unpleasant thoughts. So what is SADS? It is an acronym for  Sudden arrhythmia death syndromes. (SADS) are genetic heart conditions that can cause sudden death in young, apparently healthy people and takes approximately 4,000 young lives annually  These conditions can be treated and deaths can be prevented.

In case your interested here are the warning signs: family history of unexpected, unexplained sudden death under age 40; fainting or seizure during exercise, excitement or startle; consistent or unusual chest pain &/or shortness of breath during exercise. My Dad was on a spin bike when his heart stopped almost 2 years ago.

Until then, I had no idea that since the early 1970’s a doctor named Michael Vincent, in Salt Lake City, Utah was trying to solve this mystery of the heart which takes so many lives.  He began studying the long QT syndrome (LQTS) which is what triggers SADS (don’t dr.s just love acronyms?)

Dr. Vincent and his research team were frustrated by the number of young people with this syndrome who were undiagnosed  and at risk for dying of this disorder. It seemed that doctors were simply not aware of the problem or the ability to test for it.

[youtube=http://www.youtube.com/watch?v=4BhZcYJTJU8]

So in 1988, Dr. Vincent approached his genetics colleagues, and asked if they would be interested in attempting to find the genetic abnormality that leads to SADS. By early 1991, they had located the LQTS gene on chromosome 11.

On December 12, 1991 Dr. Vincent and colleagues established  the SADS foundation a non-profit with the purpose of helping to prevent sudden and unexpected cardiac death in children and in young adults.

Today over twenty years later, their amazing work continues to inform and save lives and there is simply nothing sad about that.

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.

Over the rainbow

Tom NilesA friend of mine whose son suffers from a congenital heart defect recently shared this video with me. I thought I would share it with you.

Tom Riles, whose day job is the warm up act for the Ellen Degeneres Show, is the father of a child who was born with a congenital heart defect. He put this piece together with other dads whose children have also have CHD for his web-site, Life of Dad.

[youtube=http://www.youtube.com/watch?v=FP6hIQtD1Mk]

I thought it was the perfect happy way to leave you smiling this friday. A big shout out for the great voices from CHLA. Have a great weekend everyone!

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.

Have a heart

heart stetha scopeWell it’s here! February and with that brings much more than chocolates, cupids and Valentines. February is National Heart month. Something I know you all have, a heart that is. I don’t know about your family but heart disease has struck way too close to home in mine.

My father has heart disease and has had multiple surgeries to help that big heart of his, my uncle and my grandfather have all suffered. So this month there is much to do to honor all of those whose hearts are so big that they have created organizations to help those suffering with the silent killer.

I thought to kick off February, sharing this story will both touch your heart and perhaps make you appreciate yours.

[youtube=http://www.youtube.com/watch?v=hbOHP2WRSz0]

We are all so blessed to have such wonderful hearts. Thank you for sharing yours with me today and for always knowing that 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.

The amazing gift of life

kelly-portraitI mentioned to you the other day that I am both a Pasadena girl, California that is, and an alumnus of an amazing girls school that’s motto is “Actions Not
Words.” This mantra has defined so many alumni of our school and none more than Kelly Langs.

Kelly, went to Mayfield Senior School and was told at a very young age that she needed a lung replacement, although she had never smoked. Kelly passed away a few days ago on New Years Day 2013. Last night Kelly donated her organs, a gift she had waited a lifetime for and now was able to share with others.

I am reposting Kelly’s last words via her blog here which she wrote on Dec 2, 2012, prior to her receiving her own gift of organ donation by someone else on Dec 6, 2012.

True Beauty in Organ Donation:
Organs are precious and they have the ability to keep giving. … It’s the cycle of life, and we as humans have an amazing choice to make in that hour of our end – to give the gift of life to someone next to you who needs it.

It’s not like any other gift you’ll ever have the chance to give again. It’s a onetime thing, and the most precious gift of all, one that you could very well be asking for one day yourself! We’re all human, we all function on organs and we’re all part of this cycle of life – together.

I’m on the transplant list, waiting for lungs. I’m also a registered organ donor in case there’s anything of quality and strength that can be passed on. I know my eyes are awesome, 20/20 vision! So someone will be able to see for the first time when I leave this body. That truly makes me happy and makes me feel like I’ve chosen the ultimate human gift!

You can give the gift of life too.

In honor of Kelly we have set up a way for you to become a registered organ donor.  If you feel you have learned from Kelly’s journey this is something you should consider.  To learn more about becoming an organ donor please click here: http://www.donatelifecalifornia.org/KellyLangs

Multiple people this very second are preparing for their journey to receive the gift of Kelly’s organ donation.  They “got the call” a few hours ago and are told “we have a match for you”.   They are rushing to the hospital, calling their loved ones with immense anticipation and fear, and probably updating their blogs too.  Believe in yourself, Kelly would say to them, everything will be okay.   Appreciate every moment.

Kelly donated her organs at 11pm PST, January 3rd.  Her liver and both her kidneys will be going to three very lucky people.

During the organ transplant last night at 11pm there was a moment of silence as Kelly’s words above were read out loud in the operating room to honor Kelly’s gift and the remembrance of her life.

“Actions Not Words” Kelly.

Charity Matters.

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The Force of Giving

Max PageOn monday we discussed how to raise philanthropic children and  I thought today I would share with you one of the best examples I know. His name is Max Page.

I met Max because he and my son are both Junior Ambassadors for Childrens Hospital Los Angeles.  Max has been a patient at CHLA many times in his short 7 years of life for multiple heart surgeries. The world knows Max as little Darth Vadar but what everyone doesn’t know is how huge that little heart really is.

http://[vimeo http://www.vimeo.com/53536378 w=500&h=281]

Max Page, Recipient of the Special Award for Charitable Works for Children’s Hospitals from American Advertising Federation on Vimeo.

Max’s parents Jennifer and Buck have guided Max and his little brother, Els, in doing things big and small for others. They have donated their birthday gifts every year, they participate in walks and runs for causes they care about and the entire family uses their voice to bring attention to causes they care about.

The Page family has taught by example the ripple effect of giving. They realized that the force comes from combining caring with action and that we all possess it. I hope the force is with you and your families throughout this holiday season.

Charity Matters.

Copyright © 2012 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.

Nancy Brinker, the woman behind the Cure

On Wednesday, I posted the story of Susan G. Komen as told by her younger sister, Nancy Brinker. I thought a follow up from Nancy was fitting. If by some crazy chance you didn’t see Wednesday’s post, I’ll refresh you with how Nancy ended it, she asked this question.

Can one person really make a difference?” 

Here are Nancy’s follow up thoughts in a letter from the non-profit she founded, Susan G. Komen for the Cure:

As I look back over the more than 25 years since I founded Susan G. Komen for the Cure, I am amazed at our accomplishments. What began as a promise to my dying sister, Susan G. Komen, has evolved into the world’s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures.

I am in awe of our victories over the last three decades.  Thanks to research, the breast cancer death rate in the U.S. has fallen by more than 30% in 20 years. Five-year relative survival rates for women with early stage cancers (before they’ve left the breast) are at 99% (up from 74%when we started). Most importantly, women today know that they are never alone with breast cancer, as they were when Suzy was diagnosed. There is a global community, millions strong, sharing our victories, fighting for us and working together to end a dreadful disease.

We began the global breast cancer movement with $200 and a shoebox full of names in my living room in 1982. We have since built a global community of scientists, advocates, neighbors and friends, working together to make this disease a distant memory.

I thank all of our friends and supporters for making so much possible. Thanks to you, Susan G. Komen for the Cure has invested more in breast cancer research than any other organization – $685 million to date.

We have fought for access to care for the poor and uninsured; funded the clinics that educate, screen and treat people with breast cancer; paid for the groceries, transportation, wigs, prosthetics and insurance co-pays to help women face breast cancer with dignity and hope. We are doing this in more than 50 countries around the world, with more to come. We have invested more than $1.3 billion to make these programs possible.

With the help of Komen Affiliates, corporate partners, individual donors, Komen staff and activists, we’ve saved millions of lives, making the 2.5 million breast cancer survivors in the U.S. the largest group of cancer survivors today.
The sad reality is there is still tremendous work left to do. We don’t know – yet – why breast cancer starts. We don’t know enough about how to prevent it. A woman dies of breast cancer every 74 seconds somewhere in the world: about half a million will die of breast cancer this year alone.

We know that we can change those numbers because we have already changes the reality of breast cancer for the better for so many women. Thank you for making the first three decades  years of progress, community and hope. Let’s make the next 30 years the generation for cures for the most aggressive forms of breast cancer, and for making those cures available to women everywhere.

Together, I know we can fulfill our Promise to every woman, man and family.

With love and gratitude,

Ambassador Nancy G. Brinker
Founder and CEO

I don’t know, what do you think? Can one person make a difference? 

Charity Matters.

Copyright © 2012 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.

Who was Susan G. Komen?

It is October and with the pumpkins and beginnings of fall mark the beginning of Breast Cancer Awareness month. By months end you might not want to see another pumpkin or pink ribbon but I think learning WHO was behind that splash of pink will stay with you long after the pumpkins have passed.

This is Susan G. Komen’s story as told by her sister, Nancy Brinker and the founder of Susan G. Komen For the Cure: (I know its longer than usual but treat yourself, its worth it)

Growing up, Suzy and I were just about as close as two sisters can get. Suzy was the perfect older sister.

She was beautiful and kind and loving, not only to me but to everyone. She was the star of our hometown of Peoria, Illinois—the high school homecoming queen, the college beauty queen.

I, on the other hand, was bigger, heavier and taller than most of my friends and her friends. I was a tomboy and a mischief-maker and delighted in nothing more than spending hours galloping around on horseback. Suzy tried desperately to teach me about the pretty things in life but none of it seemed to work. The boys didn’t know I was alive, except that I was Susan Goodman’s younger sister.

Suzy came back to Peoria when she graduated from college and got a job modeling locally. Eventually, she married her college sweetheart, Stan Komen. As if it were yesterday, I can remember the phone call I received from Suzy one Tuesday afternoon. Her doctor had found a lump in her breast that was not a cyst. He recommended a biopsy.

At the age of 33, Suzy had breast cancer.

The most difficult concept to grasp about cancer, I think, is the fact that when it is first detected the patient usually feels just fine. There is rarely any pain associated with breast cancer in its early stages. So when you are told you’ve got a life-threatening disease, and the treatment sounds more heinous than the thought of a little lump in the breast, it is understandable that a woman uneducated about cancer might opt for no treatment at all.

Such was the case with Suzy. My sister was terrified, naturally, but adamant against having a mastectomy. This surgeon suggested performing a subcutaneous mastectomy, a procedure in which the outside of the breast is left intact, but an incision is made and the breast tissue is removed. He would then do an implant ten days later. Suzy would be left with a small scar but no more cancer. She felt it was her best option.

For the next five months or so, Suzy felt pretty good. She was convinced she was cured. But before six months had gone by, our worst nightmare became a reality. Suzy found another lump. This time it was under her arm. Despite everyone’s optimism her cancer had spread.

Suzy decided to seek treatment at the M.D. Anderson Cancer Center in Houston. When she arrived, she was a Stage IV cancer patient. This means that the disease had spread to other organs in her body and was still growing. It was a very critical situation.

Suzy’s doctor’s approach to the disease was an aggressive one. Thus began the saga of intense chemotherapy, nothing can prepare a woman for the shock and embarrassment of baldness. She bore up under the strain with all the dignity and grace she could manage, although I know she was devastated. Little did I know that even then, my sister was teaching me.

Whenever we felt as if we couldn’t go on, that the load was just too heavy, it was Suzy’s grace and humor that got us through the day. She was able to find something to smile about with every turn of the road, and her infectious, warm concern was felt throughout the hospital.

The one thing Suzy never found humor in, however, was the aesthetic conditions of the waiting rooms.   She was more concerned with the treatment of the patients while my concern was the treatment of her disease. “Nan,” she said, “as soon as I get better, let’s do something about this. You can find a way to speed up the research. I know you can. And I want to fix up this waiting room and make it pretty for the women who have to be here. This isn’t right.”

For about fifteen months, the Houston doctors were successful in slowing down Suzy’s breast cancer. But then, for reasons known only to God, the disease started to rage inside her once again.

Our time together was drawing to a close. In a flood of beautiful memories, I began to look back on the sacred relationship I shared with my sister. Frantically, I wrote my memories down, fearing somehow I might forget one later. I didn’t realize then that memories so special are never forgotten. I also didn’t realize that what I was writing that sunny afternoon was my sister’s eulogy.

It was time to begin saying our good-byes.

I quickly kissed them both good-bye and jumped out of the car. I was just about inside when I heard a funny sound that sounded like my name. I stopped in my tracks and turned around. There was Suzy, standing up outside the car on wobbly knees, wig slightly askew.

With her arms outstretched, she said gently, “Good-bye, Nanny, I love you.” I hugged her so hard I was afraid she might crumble. And then I ran to catch my plane.

I never saw my sister alive again. After nine operations, three courses of chemotherapy and radiation, she had lost her three-year war. By the time I flew back to her side it was too late. She was gone.

I spent a lot of time thinking about Suzy. There is no way to accurately describe the void her absence left in my life. I also spent a great deal of time questioning my faith and wondering why such a good person was taken from a family that needed her so desperately. I often wonder, as many people do when they’ve lost a loved one, what really happens to a soul when a person dies. Was Suzy watching me? Did she hear me when I called her name out loud? After much thought I came to the conclusion that I would never know until I died myself, but I sure didn’t want to die in order to find out. Just in case, I wanted to do something to let her know how special she would always be in my heart. I was haunted by our last conversation and lay awake sometimes all night wondering what I could do to help other women with breast cancer.

Could one person really make a difference?

Charity Matters.

Copyright © 2012 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 matters?

“We shall draw from the heart of suffering itself the means of inspiration and survival.”  

Winston Churchill

It’s October and Breast Cancer Awareness Month.

In 2012, it is estimated that among U.S. women there will be 226,870 new cases of invasive breast cancer and 63,300 new cases of in situ breast cancer.

39,510 breast cancer deaths this year.

Charity Matters.

Copyright © 2012 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.

 

Nancy Brinker (continued)

Ok, so I mentioned that you might be sick of the pink ribbons by the end of the month? I do get it because the Pink Ribbon and the Susan G. Komen for the Cure have re-invented cause marketing for our society and our world.

Nancy Brinker, the founder and Susan G. Komen’s sister has written a book, which tells both her sister’s story as well as her journey in founding one of our countries greatest non-profits that began with a promise.

I thought you might want to see the face behind and the cause and learn more about her personal mission to end breast cancer.

Here it is:

[youtube=http://www.youtube.com/watch?v=7DarUhjOSSM]

Whether you know someone who has been affected by breast cancer or just someone who supports the cause

Stand Up!

If you have been anywhere near a radio or a television you have probably heard about tonight’s StandUp2Cancer broadcast, which will air on all major networks to raise funds for cancer research.

Where did this come from? Who started all this? I certainly didn’t grow up with a show like this. Only the president went across networks. The answer is a woman named Laura Ziskin.

Laura was a Hollywood producer who was diagnosed with breast cancer in 2004. She told Variety that year, “When you’re diagnosed with cancer, the last thing you want to do is join a movement. You kind of just want to crawl in a hole.”

However, she didn’t crawl into a hole she created a non-profit, Stand Up 2 Cancer, that turned into an amazing movement. In 2008,  after watching former Vice President Al Gore’s documentary she realized, “the power of the medium in which I work to affect how people think.” She used that and all her celebrity pull to create powerful change.

Janet Champ wrote this on the Stand Up 2 Cancer’s web-site and I thought it summed up the one woman force that created this change. She said,  “When you or someone you love hears the word ‘cancer’, the air is sucked out of the room. Inside your body a door closes, you can hear it, physically feel it. But Laura took that door and opened it. She refused to be intimidated or bullied or destroyed and she wanted to give others the strength to refuse, as well.

Fredrick Nietsche said ‘If you gaze into the abyss, the abyss gazes also into you.’ Cancer is the abyss. What did it see when it gazed into Laura Ziskin? It must have been terrified. Scared shitless, really, by her bravery, courage, utter determination to never blink, never run. Now we have to do the same in her honor. Open the door, look at cancer for the thief it is, and refuse to let it steal any other life, any love. In her name it’s the least we can do.”

[youtube=http://www.youtube.com/watch?v=z-nybSklJWk&feature=relmfu]

Laura Ziskin lost her battle last year but tonight you too can Stand Up or I suppose sit up and watch what one amazing woman created that has generated over $180 million dollars for cancer research.

Charity Matters.

Copyright © 2012 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.

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Camp Sunshine

Oh, it’s here! Can you feel it? Smell it? Its summer…those glorious long lazy hot days with no homework, dinners outside and warm nights. You don’t have to be a kid to love summer, it brings out the best in all of us. Everyone needs the rest and fun that summer brings, especially children with cancer.

Pediatric oncology nurse, Dorothy Jordan, realized this early on when she founded Camp Sunshine in 1982.  She saw what happened to children who received cancer diagnosis and the change that occurred from feeling like a kid to feeling scared and alone. Dorothy wanted a place where children could be kids, have fun, feel the acceptance from other children in their situation.

Her goal was to provide these children with a fun, relaxing and traditional summer camp that had 24-hour medical care, so even kids receiving chemotherapy could have supervised treatments and join in the daily activities.

(click this video.php to see video)

The first year the camp had 44 children and today it has evolved into over 200 children attending summer camp. In addition, a year round facility called Camp Sunshine House opened in order to offer support and education for families and children year round.

The impact is clear. “We are changing lives,” says Sally Hale, MN, RN, executive director of Camp Sunshine, who served as a nurse at the very first camp held in 1983. “When the children are at camp, they are just like everyone else. It gives them such a confidence boost because often it’s the first time in a long time that they’ve felt normal. And after camp, many parents say that we have actually given them their old child back.”

That is a greater gift than summer. Charity Matters.

Copyright © 2012 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.