Charity Matters
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Health

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Health

A place where dreams come true

Whats the expression, one person can change the world? Well, when you hear Thomas Rollerson’s story you will believe that. He has changed the lives of over 10,000 terminally ill people by granting their dying wish through his Dream Foundation. Org

Thomas’s journey began in 1993 when his partner was dying and had the simple request to see the movie Mrs. Doubtfire. Thomas called a wish granting agency for children and learned that there was no such place that honored last wishes of adults.  Thomas then went to the movies studios and asked them for help, so his partner could watch the film at home. He was so moved by the studio’s outpouring of love to make this final dream come true that Thomas knew he needed to replicate this for others.

One year later he created the Dream Foundation.Org.  His dream simply to enhance the quality of life for people suffering from a terminal illness by providing peace, joy and closure for them at the end of their life.

[youtube=http://www.youtube.com/watch?v=zXaCc6kx50E]

Most of the organizations “dreamers” have a life expectancy of less than a year and because medical expenses are financially devastating these dreamers resources are limited. The dreams can be as simple as having the heating bill paid, reuniting with loved ones or creating a happy family memory for the children whose parents are terminally ill.

The Dream Foundation works with more than 600 hospices and healthcare organizations nationwide along with hundreds of volunteers determined to fulfill thousands of dreams each year.

Thomas Rollerson has taken his grief and turned it into hope, love and joy for thousands of dreamers each year. Sounds like a dream come true.  What’s your dream?

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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Health

Living with Lupus

There is nothing more inspiring to me than real life heroes. Everyday people who take the hand that is dealt with grace and turn it into something of hope for others. May is National Lupus month, something I knew very little about but something Liz Sanders is all too familiar with.

Liz grew up on a small farm in Texas dreaming of being a super model, however life had different plans for her beauty. At 33 years old and a newlywed, she was planning on running a marathon with her new husband when a variety of “symptoms” slowed her down. Two years and many doctors appointments later, Liz was diagnosed with Lupus.

Lupus is an auto-immune disease that produces antibodies that react adversely with certain tissues and organs where the body becomes allergic to itself.

With a move to California, Liz set out in search of a local Lupus support group but couldn’t find one, so she became certified as a support group facilitator. She then started her own group to provide support and education for other lupus patients.

Liz didn’t stop there, in August 2003, she  founded a non-profit organization called Center for Lupus Care (CLC).  Her mission is to educate the general population about Systemic Lupus Erythematosus (commonly known as SLE or lupus).

[youtube=http://www.youtube.com/watch?v=VttrEK_d2to&feature=endscreen&NR=1]

Liz has devoted her life to educating lupus patients and their families. Wanting to offer more than just clinical advice, she has given countless women the vision to see their lupus health challenges as a butterfly experience, a metamorphosis into something different that can still be something beautiful.

“For if in any manner we can stimulate this instinct, new passages are opened for us into nature, the mind flows into and through things hardest and highest, and the metamorphosis is possible.”  Ralph Waldo Emerson

Liz Sanders has lived the metamorphosis and inspires others to do the same. 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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Autism

Danny’s Farm

As April’s Autism month comes to an end, I thought I would share the remarkable story of our friends, the Gott family. Jim and Cathy Gott’s son, Danny, was diagnosed with autism as young child. The Gotts lived the battle of therapies, the challenges of adolescence and then the reality of what happens to their son as an adult? What happens to adults with autism?

The Gott’s faith, love and tenacity knows no bounds and they were determined to create a place that not only helped their son live a fulfilling life as an adult with autism but helped others as well. That very special place is Danny’s Farm.

[youtube=http://www.youtube.com/watch?v=_7vtOnamNNw&feature=related]

Danny’s Farm’s is much more than a petting zoo. It is a place that brings joy and purpose to adults with autism as well as to young children. As Cathy said, “My hope as a parent is to inspire others to harness their children’s passion.” Danny’s passion was animals and when Danny was 15 they began planning a legacy for him and other adults with autism.

The mission is to provide meaningful employment opportunities for adults with developmental disabilities and to serve children, ages 5-17 years old, by providing  experiences through the farm’s Specialty Autism Program.

Cathy said, ” Everybody needs a job and a purpose. I challenge the corporate community to open their hearts to hire just one person with a developmental disability. I think they would be surprised what value it can bring to an organization.”

Jim and Cathy’s mission began as a journey with their child but has grown into a beautiful place that brings joy to so many. Today they are employing adults with disabilities, taking their mobile petting farm on the road and empowering adults with disabilities with purpose and passion.

When I asked Cathy what inspired her, the response was,” The community that supports us and our employees, it’s just so beautiful to watch them do their job.” Its a complete circle of caring.

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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Health

Talk About Curing Autism (TACA) part 2

Since April is Autism awareness month, I decided there is no better way to become aware of what families with autism deal with than this video. My friends Julia and Dolph are featured in this and the love stories these parents share with their children will melt your heart.

[youtube=http://www.youtube.com/watch?v=TEeIE8jWiIQ]

If you weren’t talking about Autism before, hopefully you will be now.

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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Health

Talk About Curing Autism

Every 20 seconds in the United States a child is diagnosed with Autism. A few of those children’s parents are my friends. Their journeys are truly unlike any other. Their commitment and dedication to their children is beyond inspirational.

So when I asked one of my girlfriends about where to start with Autism, she pointed me here to TACA Talking About Curing  Autism. What I found was this letter from the founder, Laura Ackerman. It was so much more than I can express so I am reposting it for you here:

In September 1999, the word “autism” rang through my ears like a cannon shot across the bow. My husband and I knew something was not going well with our son Jeff, but we would have never guessed it was autism.

Following that fateful visit with the neurologist, we visited many other professionals including medical doctors, speech pathologists, audiologists, and behaviorists. The list seemed endless. The common message we were given: Autism has no hope, no cure. In fact, the first three medical doctors recommended that my family find “institutional placement” for Jeff who was the ripe old age of 2½ years at the time.

Refusing to give up on our son, my husband and I spent hundreds of hours talking to any and all parents of a child diagnosed with autism, reading dozens of recommended books, watching countless hours of educational videos, and of course, surfing the internet constantly. We were determined that our beloved son would grow far beyond his label and that he would have a future that was wonderful and amazing despite his autism diagnosis. Early on, the most important step for us was to GET BUSY. It was up to us, HIS PARENTS, to make a difference for his future.

The early days of our son’s diagnosis were frustrating. Those countless hours spent researching, reading, talking – wasn’t there a better way? Wasn’t there SOMEONE who had already done the same research and search for answers before, who could have brought us up-to-speed much sooner for us to help our son faster?

Fast forward to November 2000, when our daughter Lauren (at the advanced age of 16) recommended that we start a parent support group. Both my husband and I felt we were not qualified but we definitely wanted the company of other families going through the same struggles for social gatherings and to share information, especially new research and treatments options as they became available. We also hoped to build a community where parents would be inspired by each other’s steadfast hopes for their children’s futures and who would be passionate about autism education for themselves and other similarly struggling families and raising awareness in the general public.

TACA began with a small handful of families in a living room in 2000. Today, we serve several thousand families around the United States. From a grassroots beginning in Southern California, TACA expanded nationwide and now operates Chapters in 18 states.

Where is my son Jeff now? He is 13 years old, attending school in a typical 7th grade placement with an aide. He talks, makes jokes, gives out hugs, socializes with typical friends, and is an active member of society with a bright future. That is a far cry from his early diagnosis and the initial prognosis for his future.

TACA’s goal is to provide education, support, and information to parents to help their children diagnosed with autism be the very best they can be, with the hope of recovery.

Today, there are many, many treatment options that help alleviate many of the symptoms suffered by our children diagnosed with autism. Let us share our collective, hard-won knowledge and experience with your family so your child’s treatment can begin right away. Ask about the autism journey because we are families with autism who have already “been there and done that” with many of our children. Some of us are still working hard everyday with our children for whom we never give up hope. We are Families with Autism Helping Families with Autism.

The autism journey is not an easy one. It’s a marathon, not a sprint; so take each minute, hour, or day, one at a time. It will be difficult, but it will also be incredibly rewarding, because it will change your life, your family’s life, and most importantly, the lives of your children with autism to all enjoy a brighter future.

I wish all families treating and caring for their children with autism the very best possible outcomes for their children as they continue forward on the autism journey.

God Bless,

Lisa Ackerman
Founder

Charity Matters.

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Health

World Health Day

Tomorrow is World Health Day, yes, it seems there is a day for everything.  April 7th marks the anniversary of the founding of World Health Organization (WHO) in 1948. When diplomats met to form the United Nations in 1945, one of the things they discussed was setting up a global health organization.

WHO’s Constitution came into force on April 7th 1948, which is now celebrated every year as World Health Day.

World Health Day is a global campaign, inviting everyone – from global leaders to the public in all countries – to focus on a single health challenge with global impact. This day provides an opportunity for conversation on how to protect people’s health and well-being.

Each year a theme is selected for World Health Day that highlights an area of concern and this year’s theme is “Good health adds years to your life.”  The focus is how good health throughout life can help older men and women lead full and productive lives. Ageing concerns each and every one of us – whether young or old, male or female, rich or poor – no matter where we live.

So in honor of World Health Day, I will continue to relax on vacation and hope that this adds a few years to my life. I hope tomorrow, World Health Day, finds you taking care of your health and your self as well.

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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Health

Why I give

Here in LA, its benefit season. The days are now brighter, longer, the invitations and donation letters begin to pile up in the mail box. With all of the fun and fundraising comes the hours of work and volunteering. Each charity benefit takes hundreds of hours of volunteers to raise funds for the causes that mean so much.

With days spent stuffing envelopes, coordinating logistics from garden tours to fashion shows and everything in between I recently found myself saying why am I doing this? Why do I volunteer? Why do I give?

The answer came to me unexpectedly the other night after a long day of meetings. I was heading to Childrens Hospital Los Angeles for the launch of the Junior Ambassador program, that I am Co-Chairing. I was tired and questioning myself until I heard Manny Hernandez speak.

His story reminded me. Why.

 (click here) video?id=8257849

Manny spoke about his 10-year-old son, Manny III and how he had been a patient at CHLA off and on most of his life. He spoke of his excitement in being able to actually build the new hospital building (he is a construction worker) where his son spent so much time. His pride in both the building and his son were evident. Manny talked about little Manny wanting to be a nurse since he had always been a patient.

When he told us that little Manny died this past December, that his dream of being a nurse wasn’t going to happen but his sisters were studying to carry on that dream well, we all fell apart. This brave and loving Dad sharing his story and love for the hospital and all it had done for his family. It was so real, so beautiful, so brave and so exactly why it is …. we do what we do.

At the end of the day whether it is a stuffed envelope, a phone call, an invitation, a donation, it is all about the people’s lives that we touch. It is those moments when brave men like Manny Hernandez share their pride in giving that makes you realize that everything we do matters. 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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Heart Disease

Camp del Corazon, camp for more than broken hearts

Have you ever been invited to an event when someone is being honored? I was recently invited to something for a friend of mine, who is one of those very generous souls that does so much with no attention to himself. He is being honored by Camp del Corazon.

As I am beginning to think of my children’s summer plans, I wanted to know more about this place. This camp isn’t just for anyone but for children who have congenital heart disease and typically can not experience camp or exercise in many cases.  My friend knows about this first hand as his child has also had multiple surgeries.

[youtube=http://www.youtube.com/watch?v=Si3qHoSRPCM&feature=related]

Camp del Corazon (Camp of the Heart) was inspired by a patient, of Dr. Kevin Shannon, who had undergone an operation that dramatically improved the function of his heart but he was still suffering from emotional pain. He was back in school, back in little league baseball but he was so embarrassed by his scars that he wouldn’t remove his shirt.

Dr. Shannon felt that if his patient could spend time with other kids who’d had heart surgery, he’d be less self-conscious. When Dr. Shannon discussed the situation with Lisa Knight, R.N., her solution was simple: “We can do that.” And so they did.

This doctor and nurse set about fund-raising to ensure that the medically-supervised summer camp would be free for children ages 7-17 who had heart disease. When Camp del Corazon began in 1995, they had 49 campers on beautiful Catalina Island , today the camp has  close to 300 campers. Camp del Corazon is staffed completely by volunteer counselors, nurses, and physicians who give of their hearts to help these special kids.

Camp del Corazon has grown into a non-profit dedicated to providing programs for children and families living with heart disease. A camp that more than lives up to its name, just like those that support it. Big hearts all the way around.

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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Heart Disease

Saving Tiny Hearts Follow Up

When I set out to tell the stories of these inspirational people who have taken their pain and turned it into compassion I never knew where it would lead. I wanted to share with you this beautiful follow up from Francie Paul, the founder of Saving Tiny Hearts.Org

Here is Francie’s note:

Thank YOU for your beautiful post- we are extremely honored to have Saving tiny Hearts featured.

We did have high profile malpractice attorneys at our doorstep…practically before we were out of the hospital from Joshua’s firstheart surgery…it wasn’t who we were…our life’s mission came out of the greatest need for medicine and science into heart defects to catch up to support all children, like our little love, afflicted with heart defects.

Starting the Saving tiny Hearts Society began before our Joshua’s second heart surgery (- he has had 3) at 3 months old, after pediatric heart surgeons told us that there was a desperate need to fund research, that young hungry scientists were being turned down for government funding because they didn’t have enough monies to beef up their revolutionary proposals….which is where we would come in, to provide the seed money for it all.

Most people don’t realize that so many babies and children do not survive because of lack of research to save them.  We didn’t know that it was the #1 birth defect in the world and the #1 cause of birth defect related deaths….we didn’t know that it could happen to our baby.

Someone had raised funds for research for us 30 years ago and our baby was given a chance to live. Ten years from now will be a whole different ball game into medicine, science and technology into heart defect research.  We don’t want to wait for what doctors say ‘will be….’ we want to fund research to change the future for ‘what can be…’ for all children, like my beautiful Joshua suffering from heart disease.  Out of our heartache, there is hope….

I don’t know if you had seen the movie ‘Something the Lord Made’ but it was an HBO movie about one of the very first heart surgeries ever performed, the Blalock-Taussig Shunt (-BT Shunt). It was the very first successful heart surgery that began with a blue baby as doctors were afraid to touch the heart and felt that of these babies wouldn’t live otherwise, so they would try this most revolutionary procedure on a baby first.  Nearly 60 years later,at 4 days old, after our baby was stabilized, he had a Blalock-Taussig shunt.

We can’t thank you enough for sharing our story; it has truly been a humbling journey for us and in the greatest of heartache, we have seen the very best in friends.  Can’t wait to read more Charity Matters and see all of the amazing things that are happening because of you.

With Gratitude & Very Best Wishes,

Francie

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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Health

A Golfer with Heart

This being National Heart month and heart disease being a big part of my own family. An amazing story of heart was recently brought to my attention and I thought you might be inspired as well.

His name is Erik Compton and he is a professional golfer, not the founder of a non-profit. But a man with a very big heart for life and a person who has lived the story of heart disease since he was 12.

[youtube=http://www.youtube.com/watch?v=WVfI7SonW0M]

Erik gives a face to thousands who wait for heart transplants each year. President Clinton said last month about Erik, “And you think if someone can overcome all the real problems that he’s overcome to live the life that he’s living, then the rest of us ought to do a better job of staying healthy enough that we don’t bankrupt the health care system and we don’t undermine the ability of our children to raise our grandchildren and we don’t raise the first generation of kids to have shorter lifespans than their parents.”

Like many of us Erik has a family and travels for his golf career but can be found volunteering his time for special events and hospital visitations to meet transplant patients and their families in support of organ donation and transplant awareness. That is a true champion.

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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Health

Saving Tiny Hearts

There is always that defining moment. We each have them, some bigger than others.  On August 11th, 2005 Francie Paul had that moment when she gave birth to her son, Joshua. Francie’s moment was more than that of a proud new and tired mother but one of concern.  Four hours after his birth, Joshua was rushed from the local hospital where he was quickly diagnosed with Severe Complex Congenital Heart Disease.

It is there is that moment, that small space in time that having a sick child will either destroy you or define you. The Paul family had that moment, frustrated and angry with their son’s condition.

“Like many parents in our position, we became very angry and once the dust settled we considered litigation as a course of action. After meeting with high-profile medical-malpractice attorneys in Chicago we decided that this route was clearly not for us. In the elevator on the way out of one of the attorney’s offices we called Brian’s (my husband) corporate attorney to find out how to start a Public Charity. We felt channeling our energy into something positive instead of something negative (like litigation) would be a much healthier and more fulfilling way for us to focus our efforts.”

The result of that frustration and emotion was channeled into the creation of Saving Tiny Hearts.org  Since 2006, the Saving tiny Hearts Society has been working to fulfill its mission of raising seed money for grossly under-funded, lifesaving research of congenital heart defects. This seed funding acts as a bridge for this research to millions of dollars of extramural funding from the National Institute of Health. To date Saving Tiny Hearts has funded five (5) research projects.

Today, Joshua is thriving and the Paul family’s change of heart from anger to action became that moment that matters. Their heart has helped thousands of tiny hearts. 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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Health

Go Red!

There is nothing better than a little red dress to perk you up (sorry boys, but I’m sure you appreciate them too). So, since its Heart Month, its February and its almost Valentines Day. Why not Go Red?

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Remember to Go Red, wear that little red dress and most importantly take care of your self and that big heart of yours. Without that heart there wouldn’t be Charity that 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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Health

Hopeful Hearts Foundation

I recently met an amazing mom at Childrens Hospital Los Angeles, who shared with me her son’s journey of Congenital Heart Disease. February being heart month, I wanted to share this story, about her friends the Chez family. A true story of the heart.

Adam and Terra Chez are parents whose three children were all born with Congenital Heart Disease.  Although, 1 out of every 100 babies are born with congenital heart defects, discovering that all your children suffer is an unimaginable and overwhelming experience. The Chez family discovered that their twins, Gracie and Luke had congenital heart disease in utero.

Their twins both had open heart surgeries in their first six months of life. Gracie had a second surgery and then died unexpectedly at age 3 on January 9, 2008. Despite their shock and despair the Chez family was determined  to keep their sweet daughter’s  memory alive.

“God showed us simply how much we are not in control of anyone’s destiny, not even our children, nothing can change the ultimate plan God has for us.  Our hearts began to feel the need to help others; it was then that we decided to pour our hearts into a foundation and give back. In April of 2008, Hopeful Hearts was established.”

[youtube=http://www.youtube.com/watch?v=Vc5HIDQuNnc]

Hopeful Hearts goal has been to help build both awareness and support for all families that have been affected by congenital heart disease. The Chez are committed to helping fund research for heart valve replacement and for the care involved from the corrective surgery through the healing and recovery process.

The following year, in August 2009, Adam and Terra were blessed with another child, Abigail, who also suffered from the disease.

Now with renewed determination to help families like their own, Adam and Terra have committed to promoting the health of children with congenital heart defects and cardiac disease, while honoring their children Luke and Abbey who live with Tetralogy of Fallot and the memory of their daughter Gracie. ” Our hearts are filled with the loving memory of our daughter and hope for the future of Luke, Abbey and all children who confront congenital heart disease with courageous hearts.”

“Our life was forever changed after finding out about our children’s heart conditions.  Our hope was to possibly find a way to bring families together and support those who were going through the same devastating experience we ourselves had been through. We wanted to be able to give back for all that we felt was given to us, through God’s Grace.”

A true story of love and making a difference for others from the heart.

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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Health

Donate Life, Jessica Melore’s story

I was recently reading Glamour magazine and came across the amazing story of Jessica Melore. She is so inspiring that I needed to share it with you.

Jessica was 16 when she suffered a massive heart attack. She waited 9 months for a miracle, a heart transplant.

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

Today, Jessica is 30 and due to the gift of life she has attended Princeton University, interned at Good Morning America, Sesame Street, and New York City’s Lincoln Center.  She is an advocate for youth with disabilities and a beacon of hope for the 110,000 people waiting for an organ donation today.

Jessica is working with Donate Life America on their 20 Million in 2012 campaign, to increase donor registration in state registries.  “I am so proud to be part of Donate Life America’s 20 Million in 2012 campaign.  Real life stories like mine can inspire people to sign up to be organ, eye and tissue donors, and provide hope to the more than 110,000 men, women and children on the organ transplant waiting list.”

Jessica is committed to giving every person waiting for a transplant a second chance at life.  Will you? I just did.

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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