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Once Upon a Room

Like all good fairy tales, it begins with once upon a time…there was a beautiful woman named Jennifer Hull and her heart was so huge that she not only adopted one child but created a non-profit to help hundreds more sick children at children’s hospitals around Los Angeles. Jennifer and I have known each other for a while and a few years back I interviewed her about their incredible cause called Once Upon a Room. A non-profit organization that decorates rooms for children who have long stays in the hospital.

Since that time, Jenny’s daughter Josie, Josie’s best friend Sienna, my son and host of amazing high school students have brightened hundreds of children’s hospital rooms with their work. Now that my son is heading to college in Texas he and his buddies are bringing Once Upon a Room to their local Children’s hospital. This week I thought I would share the magical fairy tale once again…because like all good fairy tales we want to read them over and over.

Charity Matters:  Give us a little back round on you and Josie?

Jennifer Hull: A little history about Josie and I…I am the very proud, adoptive mother of Josie. Josie and her sister, Teresa, were born in Guatemala and were conjoined at the head. They came to the US at 9 months old. At 1 year old they underwent surgery done by a 50 person medical team to separate them. After 23 hours in the operating room, our two beautiful girls were rolled out in 2 separate beds.

We were granted a miracle that day and have spent every day since trying to do everything in our power to better the girls’ lives and those around us. As one can imagine our medical journey did not end at separation surgery. There have been countless hospital stays with over 30 surgeries combined and hours upon hours of physical therapy. 

We know from first-hand experience when you are in an environment that makes you happy and calm healing is easier to achieve. It was important to Josie and me to help others in medical situations feel better. The main portion of our program is to decorate hospital rooms for pediatric patients going through active medical treatment.

Charity Matters: What was the moment you knew you needed to act and start your non-profit?

Jennifer Hull:  Once Upon a Room has a tag line…Every child has a story. My sweet daughter, Josie spends so much time in the hospital. Every time we are inpatient, I noticed her spirits were lifted when we would bring in items that were ours and set up a mini “house” like atmosphere. We have had the pleasure of meeting other patients and families over the years and when we would visit them we would bring something to brighten their room we could see the joyous effect it had.

We wanted to expand our reach and really transform the hospital setting into a personalized, happy environment. Josie and I got excited about the possibility of spreading joy to others in the hospital. We knew we needed to do this. We wanted to serve others and this was such a perfect fit for us.

Sienna, Josie and Ford

Charity Matters: Who along the way has helped you make this journey happen?

Jennifer Hull: Siena Dancsecs is a huge contributor to our success and is one of Josie’s best friends and has been through so many ups and downs with Josie medically. Siena’s passion to help others started to light on fire. At 11 years old she called to tell me that the organization should be named Once Upon a Room. She said that our mission should be to serve pediatric patients in and out of the hospital that was inactive medical treatment. 

Siena says, “Through my friendship with Josie I wanted to do more. We do what we do because we can see the long-term impact it makes. I remember getting asked to go to the hospital for the first time. I honestly had no idea what to expect, what I would see or what I would hear. Normally when I think about a hospital I think about all of the needles, medicine and doctors. We get to see a different side of it. When we walk into those rooms we get to brighten this patient’s room with what they like. It becomes all about them in a different way. It’s not all about their disease or injury; it’s about them as a person. That’s what makes it so special. Getting to make these patient’s days just a little bit brighter. And truly it affects not only their environment but also everyone around them. It brings this glow to their surroundings, helping them start fighting a little harder.”

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

Jennifer Hull: This is an easy question…making other people happy!! As Josie says, “We do this to make other kids happy. I know how hard it is to be in the hospital so I want to help them too.”

We can’t change the medical outcome but we can change how they feel when they are going through this journey. You can’t believe how rewarding it feels to know that you put your heart and soul into doing something for someone else that hopefully makes a difference in his or her life. Every room we do we put ourselves into their shoes for a moment. We do our best to anticipate what they would want or what would bring joy to them.

When we get the theme of the room we try to do the best we can to make it perfect for them. You would think after doing over 500 plus rooms it would be redundant but instead, we try to make each room better and more personalized. Making someone else happy fuels us. Hopefully, that person is the patient, but also the family. Being in the hospital is so stressful for the whole family.

We are one of the few people who walk into the room and can concentrate on the person, not the medical diagnosis. We get to recognize them and their interests. The family gets to be reminded of the person, not the condition.

The other part that fuels us is the excitement that it brings to the medical staff. You almost see them invigorated. It is so much fun to watch them and their reactions when they are watching a room reveal for one of their patients that they clearly have compassion for. It is a gift to us to make others feel special.

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

Jennifer Hull: There is an interesting thing that happens in our group. It isn’t only the patients and families that we affect. Many times it is the volunteers or vendors that we see affected by our work. It is so much fun to go into Target and the cashiers are all excited to see what rooms we are shopping for. It is so rewarding to see the change in our volunteers when they come to help. 

Witnessing the love and compassion that kids and teens give to patients is one of the best gifts in my life.  We don’t give them enough freedom or opportunities to give to others in a meaningful way. Giving them a positive experience serving others at a young age while hopefully help them remember that feeling when they are adults and they will find a cause that they can make an impact giving to as adults.

Charity Matters: Last question before we end this fairy tale, tell us what success you have had?

Jennifer Hull: Our success isn’t measurable. Success for us is determined by the about of love and compassion we are able to spread to our patients, families, staff, volunteers, and vendors. It is the ability to spread hope and happiness. Our success is based on helping and serving others.

Now that is happily ever after….if ever I have heard one.

 

Charity Matters.

Copyright © 2019 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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The Comfort Cub

Have you ever had a friend that keeps telling you, “you need to meet so and so.”  Well, a friend of mine has told me for years that I needed to meet her friend, Marcella Johnson, who is the founder of the nonprofit The Comfort Cub. The stars finally aligned and we had a conversation last week that was supposed to last for forty-five minutes and when I looked at my clock and saw that two hours had passed I was in awe. She was beyond worth the wait and such an inspiration.

In 1999, Marcella’s fourth child, George died shortly after he was born from congenital heart disease. Marcella used her grief as fuel to help others who were suffering from broken heart syndrome and trauma in her creation of the nonprofit the Comfort Cub.

Charity Matters: Tell us a little about what The Comfort Cub does?

Marcella Johnson:  The Comfort Cub is the world’s very first weighted therapeutic teddy bear.  After I lost my newborn son George in 1999 due to congenital heart disease we developed the Cub to help other mothers who suffered from the loss of their infant. The Comfort Cub is specially weighted and is intended to simulate the weighted comfort of cradling a newborn. While the initial intent of The Comfort Cub was for child loss, research now shows it provides profound relief for any traumatic event. This includes having to leave the hospital while your baby is still in the NICU, the loss of a spouse, parent, loved one or beloved pet. It has also been effective for occupational & autism therapy, adoptions and those experiencing divorce or traumatic loss. Due to deep touch pressure, holding The Comfort Cub triggers the brain to release the neurotransmitters dopamine, serotonin and oxytocin, which causes the body to relax and feel comforted.

Charity Matters: What was the moment you knew you needed to start The Comfort Cub?

Marcella Johnson: Leaving the hospital empty handed, with nothing in my arms was one of the worst parts of the whole experience of losing a child.  It was doubly heartbreaking because when it was time to be discharged my husband took all my things and went to get the car.  I was in the elevator next to a woman both of us had just delivered and she had balloons, flowers, her baby boy and I had nothing to hold, it was so painful. Then when we were both wheeled outside to pick up her husband has the video camera, the balloons, and the joy. I just wanted to die. Then my husband pulled up and to see his pain looking at this happy new family was so hard, watching him suffer. We just drove off in silence.

What happened when we got home was that the emotional pain felt like an open wound. My chest literally hurt and my arms ached and no massage or Tylenol made it go away. There was a dull ache in my heart and I thought I was losing my mind. Twenty years ago people didn’t know about Takotsubo Syndrom, also known as broken heart syndrome, but research eventually proved that I wasn’t alone. 

A week after the funeral I asked my dad if he would meet me at the gravesite and he had this beautiful pot of flowers to leave at the grave. When I held the pot the aching in my heart and arms went away. I was sure I was losing my mind. Then I began doing my own research on grief and discovered women who were grieving would hold sacks of flour or carried a pineapple wrapped in a blanket and realized that the pot was about the weight my child would have been.

I had asked people to donate teddy bears instead of flowers in baby George’s name that we would bring to the local Children’s Hospital. We had a lot of teddy bears and about four months after the funeral I saw a Build a Bear and I went to the manager and told him my story and that I wanted to try to create a comfort bear for other women like me. He told me he would help me after work and to go and buy all the split peas that I could find. We opened up the bears and filled them with 6.7 lbs of lentils (baby George’s weight) until we got the weight just right. The following year we started the organization because I was determined that I am not going through this in vain and if I can help just one other woman than I will be satisfied.

Charity Matters: Tell us a little about How you started The Comfort Cub after the prototype?

Marcella Johnson: Helping to me is second nature. I wanted to make sure that no woman in San Diego left the hospital the way that I did. My husband and I started a fund with the money that we would have spent on baby George. So instead of the money to buy diapers and formula, we bought teddy bears, ribbons and spilt peas. A hospice organization asked for ten bears and the Children’s Hospital asked for twelve. I got my girlfriends together and we started an assembly line.

I realized early on that this doesn’t belong to me but I am simply a steward of this. The way people have responded to this bear is so much bigger than me. The reaction from parents and people who have gone through trauma has been so inspiring. Unfortunately, when there has been a tragedy we have sent the bears. My sister lived near Sandy Hook and showed up at the office with the bears. The office manager said they had received 60,000 teddy bears and didn’t need another bear. When she told my story the office manager said she would hand deliver each Comfort Cub to tall of the parents of Sandy Hook victims. Then the parents of the teachers who were killed at Sandy Hook Elementary requested the bears. We made three hundred cubs for the grief group of the Vegas tragedy and just this past week we delivered bears here in San Diego for the recent shooting at the temple.

Charity Matters: What are your biggest challenges?

Marcella Johnson: Our biggest challenge is to get people to understand. Twenty years ago people didn’t know about the physical effects of grief and Takotsubo Syndrome. People can sometimes feel overwhelmed by helping women who have lost children and they either get it or they don’t. The Comfort Cub isn’t about sadness but about hope and healing. People are much more interested in talking about trauma than death. Why it is uncomfortable for many of us to try and find the words for people who lost someone we can not turn our backs on those who are suffering. 

There have been times when this work has been hard. When the economy changed and we had the financial crisis in 2008 funding became more challenging. I had three other children, was making the bears, distributing them and it was a lot. We had a Comfort Cub hotline where we offered them for free to anyone in the United States who had a need. The San Diego Hospice group ran the hotline and funded much of the program in the beginning until a few years ago when they closed down. In 2013, I officially started running everything and in 2015 we became our own nonprofit.

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

Marcella Johnson: This work is internal and in my heart. It is in my soul and I feel called to do this work. There are so many people that are grieving out there and we need to help them. I believe that I am supposed to be doing this work. 

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

Marcella Johnson: There are so many ways….I hear from the hospital all the time the comfort and peace the cubs give to so many. The people who write on our Facebook page about what an impact the cub has made.  I find out second hand because I do not directly distribute the comfort cubs. However, a few years ago I received an award and they brought out a woman who had lost a child and she was carrying something that looked like the velveteen rabbit, it was so worn and loved. I realized as she began to speak about what the comfort cub had done for her that she the loved thing she as holding was her comfort cub.  It is just wow to realize the difference we have made and it takes your breath away.

Charity Matters: Tell us what success and impact you have had?

Marcella Johnson: Since we began we have given over 15,000 Comfort Cubs. So often we learn that these cubs are usually passed on to at least three people. People want to give their cub to someone else who is hurting and now needs it. When you do the math that is touching almost 45,000 lives. I have a friend who is a nurse practitioner and she was recently doing a physical exam. The woman undressed and had a comfort cub tattoo. My friend asked about her tattoo and the woman explained that she had lost a child and that the comfort cub literally saved her life and she wanted it tattooed to always have it with her. That was an impact that I never expected. 

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

Marcella Johnson: Before losing a child I always thought it was best not to mention a person who has died’s name. I have learned that you do not want a loved one to be forgotten. I make it a point to always tell people that whoever they lost, mattered. Also, the more you can do to help someone who is grieving the better, it doesn’t have to be anything grand but just to let them know you care.

Charity Matters: How has this journey changed you?

Marcella Johnson: My son’s passing changed my life forever. I wanted to know when he died where did he go? Where is my child? His death sent me on a quest to know more about my faith. It made me realize that we are not in control of anything. Life is short and we need to enjoy and celebrate all the goodness in our lives. Let’s go to the birthday parties, let’s go to the graduation parties and see our children in their plays.  You need to tell people who are meaningful in your life that you love them and what they mean to you because it is fleeting. This is my journey and this is my life….

 

Charity Matters.

 

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Copyright © 2019 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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Opening Minds Through Art (OMA)

“Sometimes you will never know the value of a moment until it becomes a memory.”

Dr. Seuss

Almost a decade ago I made the most amazing friend through a wonderful happenstance. I was filming a fundraising video for my  alma mater and the filmmaker, Noah Applebaum, was so talented, compassionate and smart that I asked him to help me with another nonprofit project, and then another and then another. Through the years Noah’s heart has shown through in a multitude of nonprofit videos we have worked on together and our friendship has been a wonderful gift. Last week Noah told me about this incredible documentary film that he is now fundraising to make for an Alzheimer’s program called OMA, which stands for Opening Minds Through Art.

Noah’s late grandfather had gone through the program and Noah wanted me to meet the nonprofit’s founder, Dr. Elizabeth Lokon.  We had an incredible conversation and it became abundantly clear why Noah wants the world to know about this remarkable woman and her journey to give the elderly an opportunity to express themselves through art once dementia has left them without a voice. If anyone can tell their story it is Noah. Talking to Dr. Lokon was beyond inspirational and a privilege.

Opening Minds through Art (OMA) from NoahApplebaum.com on Vimeo.

Charity Matters: Tell us a little about what OMA does?

Dr. Lokon:  Opening Minds Through Art (OMA) is an intergenerational art making program for people with Alzheimers disease. The program provides opportunities for creative self expression for people with dementia.

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

Dr. Lokon: I had my Master’s Degree in Fine Art and got my PhD in 1997. I had been teaching teachers in Japan from 2000 to 2006 and I had a student club called MICA where we did service for a number of causes. We cleaned beaches, bought toys and were very involved with an organization that prevented sex trafficking of Cambodian children through education. When my husband retired he said to me, “What do you want to do now? Our kids are grown.”  I knew that I wanted to go back to school to make a difference and that my primary goal was to live a life of service.

In education I learned about the first half of life but I knew nothing about the second half, so I decided to study Gerontology. When I came back to the U.S., I moved into a nursing home to learn a new culture, it was like a whole new world and I approached it like an anthropologist. Then I saw people with dementia. They were kept clean, safe and ignored. They were zombies.

 As an educator I knew this was not fair. Children have programs and advocates but with older people there is no one to speak for them. Even with dementia people can have joy. So, I went back to school and worked with a theater program that was for people with dementia. The program used photos to trigger memories to tell imaginary stories. So, in 2007 I asked if I could intern and I moved into a nursing home.

I quickly realized that art was a way of connecting with the patients, like the theater program. Verbal skills may have been impaired but people with dementia could flourish if there wasn’t any language, they could paint. In 2007, I had the idea for OMA.

Charity Matters: Did you grow up in a philanthropic Family?

Dr. Lokon: No! I did not. I am Chinese but grew up in Jakarta, Indonesia. When I grew up there was a large gap between the wealthy and the poor. I had to walk through the slums to get to school and I remember on my way home from school as an 8 year old bringing younger children home from the slums just to be bathed.

Charity Matters: What are your biggest challenges?

Dr. Lokon: Funding. While we are funded under the Scripps Gerontology Center, an Ohio Center of Excellence at Miami University.Scripps Gerontology Center, an Ohio Center of Excellence at Miami University for operations, the biggest challenge is trying to plan our work and the expansion of our work with extreme financial variability . The other challenge is that I know that our program works and we want to expand our work to other medical schools. We want them to be able to have OMA training. I want to give schools the opportunity to train students to be better health care providers. We need to create awareness to fund this work and it takes a lot of time and effort to make this happen.

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

Dr. Lokon: I continue to go to a site each week and I see the magic happen and it keeps me grounded and going.

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

Dr. Lokon: Students realize that it is a privilege to be with someone vulnerable with dementia. Students change and see a shift in themselves. The students begin to see themselves differently and value themselves. I know I have made a difference when I see a student put their arms around their partner with dementia and I see the connection between the two. From a distance you cannot tell that that there is dementia because the old and young person look “normal” and that is the power of human connection.

The patient feels normal and in return the student knows they have made a difference. This is something special. The students write in their journals about their experiences and you know you have made a difference.

Charity Matters: Tell us about your impact at OMA?

Dr. Lokon: We began the program in 2009 and since that time we have  trained over 2,00o students  from Miami Ohio alone. We have 150 locations in the United States and Canada that are using our program and are serving eight retirement programs locally. We are currently working with ten universities and their medical/nursing schools to ensure that their students know how to treat those with dementia and communicate with them. When I think of the ripple effect of just the 2,ooo plus students  who become kinder to people with dementia. People who no longer dismiss the elderly, students who are more respectful. I think the measure of success is a cultural change within the aging world, one student at a time. 

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

Dr. Lokon: I have learned there is value to everyone in any stage of life regardless of age, condition or disability. There is a reward in seeing that value and in making a human connection. I have learned the importance of social connection and seeing everyone as worthy of your time, attention and love. In the end, it is just what it means to be human.

Charity Matters: How has this journey changed you?

Dr. Lokon: This journey has changed me by making me more aware of the deeper purpose of what it means to be together. What it means to connect and how much is really happening in that connection. We are so busy meditating and going to yoga that we are depriving ourselves of the very substance that makes us whole.

Charity Matters

 

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

Copyright © 2019 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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Uprising Yoga

 

While I am still compiling my final New Years resolutions one of them is definitely to do more yoga. In a recent yoga class I was talking to my instructor about her work volunteering in juvenile hall teaching trauma informed yoga with an organization called Uprising Yoga. My yoga teacher and friend introduced me to the amazing and beyond uplifting founder, Jill Ippolito Weiss. Jill has taken her gifts to bring yoga to both underserved communities and to the incarcerated kids at juvenile hall.

I came away from our conversation inspired, invigorated and moved.

Charity Matters: Tell us a little about what Uprising Yoga Does?

Jill Ippolito Weiss: The mission of Uprising Yoga is to bring trauma informed yoga to the incarcerated and to underserved communities. Trauma informed yoga helps people understand the impact of trauma on your entire mind and body, it helps understand the imprint left on the brain.

We have now had such growth that we are training the trainers to bring our program to social workers, probation staff and more teacher awareness. We are building sustainable business models where others can take our curriculum into their communities and use to provide trauma informed yoga.

Charity Matters: What was the moment you knew you needed to act and start Uprising Yoga?

Jill Ippolito Weiss: In the summer of 2010, I was dating a man named Nick, now my husband and he came home from work and was shaking and upset. I asked what was wrong and he explained that he had just toured a youth prison camp. He described what he saw and I asked him, “Can I teach yoga there?” 

I was working at a yoga college with my friend Mary and she was trying to put a group of instructors together to teach in juvenile hall already. Between the two of us we tried to find a way to actually get into juvenile hall. Getting clearance to work in prisons is a big deal. For months we tried to offer our services and got nowhere. Then in 2011, Nick and I were at a Christmas party and I was talking to a man who worked in the prison system and told him what I wanted to do. He and his colleagues all reached out and said, “When do you want to start?” So Mary, Nick and I began teaching trauma informed yoga on Tuesday nights to juvenile hall’s most vulnerable kids, the foster care sexually trafficked minors. 

Slowly, the classes began to grow and grow. We received a grant to determine how yoga was helping these kids. A friend said, “Have you thought about starting a nonprofit?”  So in 2012 we started officially. We were having a fund raiser and I called my mom to ask if she would donate. She asked what for and I told her to help the kids in juvenile hall. My mom said,” Jill, I picked you up there when you were a kid.” I was speechless because I honestly did not remember that I had been in the juvenile hall that I was now teaching in. Because I didn’t remember I began to study trauma and how it affects your brain and how we heal from trauma. That is how I connected trauma and yoga. 

I knew that I had gotten into trouble and I knew that recovery and yoga had saved my life. I hadn’t really been able to figure out why I was drawn to incarcerated youth until that moment. What pulled at my heart is that my mom came for me and no one is coming for these kids.

Charity Matters: What are your biggest challenges?

Jill Ippolito Weiss: I had no idea when I started how this was going to grow and expand. Our biggest challenge is that there is not enough man power and so much need that we simply can not meet.

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

Jill Ippolito Weiss: Connection and the stories I hear about what we do works. The thank you notes that I receive from students that say, “Thank you for letting my body detox.” It makes me high on the universe . My work matters. The ultimate gift is hearing that how you changed someone’s life for the better.

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

Jill Ippolito Weiss: There are so many ways but when we receive a letter, an email or a picture from juvenile hall saying, “Thank you for caring about us.” I know we are teaching life skills and that what we teach lasts a lifetime. I was recently asked to participate in a book about best practices for yoga in the criminal justice system. When people recognize me for my work that is touching.

We recently had a hostage/shooter situation at our local Trader Joes a block from our home.  The day after the situation I called volunteered my services to teach trauma informed yoga to the hostages.  I felt so helpless and thought what can one person do to offer their gifts and talents?  There was so much pain and trauma in my own neighborhood. So now we come together once a week and the trauma informed yoga has brought us all together. The yoga is healing these victims of violence and has given me an opportunity to use my gifts to let others know I care. These hostages have told me how this class has healed them.

Charity Matters: Tell us a little about your impact? The successes you have had?

Jill Ippolito Weiss: Our impact is on many levels. It can be as small as what we do for one person with our one on one work or large when we do large events. We know that violence goes down significantly after we work in the prisons. Today is our work is recognized nationally and internationally. Our Uprising Yoga curriculum is spreading across the country because it works and people are replicating our model. That is when you know your work has impact.

Charity Matters: What life lessons have you learned since beginning Uprising Yoga and how has this experience changed you?

Jill Ippolito Weiss: I have learned that people are good and want to keep doing good.  Once the nonprofit got started, people who cared came out of the woodwork to volunteer, to help, to donate and that literally shifted my entire perception of humanity. I didn’t know people had SO much good in them. I continue to believe that.

This experience made me go from suspicion and confusion into understanding why I went through my pain and how my healing process became available to others. I understood what my own healing journey meant. The yoga just didn’t heal me but it also healed everyone around me. My husband Nick has been a part of this entire journey and I feel that our love is shared out into a community.

Charity Matters

 

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

Copyright © 2019 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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Elizabeth Taylor AIDS Foundation (ETAF)

There is nothing better than friends supporting one another. A few weeks ago Jennifer Hillman of LuxAnthropy asked me if I had met the amazing people over at The Elizabeth Taylor’s AIDS Foundation? The answer was that I hadn’t and to be honest I was completely naive in my thinking about AIDS, that was until I spoke with Joel Goldman who has acted as the Executive Director of The Elizabeth Taylor AIDS Foundation (ETAF) for the past five years. With World AIDS Day here, this Saturday, December 1st, it seemed like the perfect time to share our enlightening and moving conversation.

 

Charity Matters: Joel give us some HISTORY of how the ETAF began?

Joel Goldman: In 1985 Elizabeth Taylor planned a benefit for AIDS Project Los Angeles, that was the same year that Ryan White was banned from entering school for having AIDS. Elizabeth’s friend, Rock Hudson died of AIDS that year along with 12,529 other Americans and Elizabeth Taylor and Rock Hudson’s doctor, Dr. Michael Gottlieb, created the National AIDS Research Foundation, which became AmFar. By 1987 over 40,000 Americans were dead from AIDS and a year later that number jumped to 61,800 deaths. 

In 1991, Elizabeth Taylor sold her wedding photos to People Magazine for one million dollars to begin the funding for the Elizabeth Taylor AIDS Foundation. That same year Freddie Mercury of Queen died of AIDS and by now, one million Americans were infected with HIV. By 1996, the United Nations estimated that 22.6 million people worldwide were living with HIV and by 2002 HIV was the leading cause of death worldwide for people between the ages of 15-59. When Elizabeth Taylor died in 2011 there were 34 million people living with AIDS.

I came to The Elizabeth Taylor AIDS Foundation five years ago to lead this incredible organization without Elizabeth Taylor at the helm. My mission was to take her legacy and build a continued legacy in global health.

Charity Matters: Tell us a little about what the Elizabeth Taylor AIDS Foundation Does?

Joel Goldman: We were established to provide funding and grants to organizations around the globe that offer direct care to people living with AIDS and HIV.  We also focus on HIV education around the globe and advocacy programs.  We work on HIV criminalization reform that still exists in 31 states across our country. We have mobile clinics in Malawi that are treating up to 1,000 people per day.

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

Joel Goldman: What fuels me to keep doing this work is the global disparity in access to medication. There are over 36 million people globally living with HIV and millions do not have the same access to the medication they need. Our work is to ensure that everyone has an equal playing field.  Part of that work is education and going to Washington DC for AIDS advocacy on Capitol Hill.

Joel Goldman with Elizabeth Taylor’s grandchildren (photo:Sean Black)

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

Joel Goldman: We know we have made a difference with the education and awareness work we fund. We have made an impact on our advocacy laws and in the millions of people we serve with our support services. The ETAF has granted over twenty million dollars to over 675 organizations in 44 countries and 42 states. We make a difference every day in big and small ways.

Charity Matters: What life lessons have you learned from your time at the ETAF?

Joel Goldman: There have been so many life lessons learned during my five years here at ETAF. This was my first time in the Executive Director role and there was an immediate lesson in responsibility and truly caring for an organization and it’s legacy.

I have learned how much better our world would be if we all partnered instead of competed. I learned this when we partnered with a malaria organization in Africa because people were willing to be tested for malaria and afraid of being tested for HIV. Today because of that partnership we treat more malaria in Africa than HIV because we were willing to build a bridge to work together. More than anything, I have learned that if we are going to defeat something we ALL need to come together.

Charity Matters: How has this journey changed you?

Joel Goldman: I was diagnosed with HIV in 1991, the next day I needed to fly to Los Angeles for a job interview from Indiana. I was in shock with my diagnosis and thinking I was going to die of AIDS, I upgraded my plane ticket to first class…thinking why not? On the plane, I ended up seating next to Ryan White’s mom, Jeanne. I thanked her for all she had done and was doing for AIDS patients, not sharing with her my diagnosis. I asked her why she was going to LA. She replied that she was going to give Elizabeth Taylor an award for her work with AIDS.

Five years ago, on my first day at the Elizabeth Taylor AIDS Foundation, they gave me a stack of folders on the history of the organization. The first one I opened was the photo of Ryan White’s mother presenting Elizabeth Taylor with her award. I knew then and know now that I was meant to be here and to do this work. All I can hope is that I have done Elizabeth Taylor proud.

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Project Angel Food

“In every community, there is work to be done. In every heart, there is the power to do it.”

Marianne Williamson

As we enter the month of November, it is time to think about food, hunger, and Thanksgiving, sort of the ying and yang that is life. It is a bit bizarre, that as we begin to think about the feast we are about to have, we somehow become acutely aware of those who struggle to have food or make a meal. A few weeks ago, a friend of mine connected me to an amazing organization called Project Angel Food. As someone who has a strong affinity for angels and who believes in signs, I knew I was being sent there for a reason.  I wanted to know more about the cause before taking my field trip to meet Project Angels Food’s Executive Director, Richard Ayoub.

The organization began in 1989 by the famous author and spiritual trail blazer, Marianne Williamson, as an outreach program of the LA Center for Living. The Center for Living was created to help people with life threatening illnesses and provide services and lunch for those who were too ill to leave their homes.  In response to the growing HIV/AIDS epidemic at the time, Project Angel Food moved into the kitchen of the Cresent Heights United Methodist Church.

I went down to see what this organization that really rose up to meet the HIV/AIDS crisis was doing today and have an enlightened tour and visit with their fantastic Executive Director, Richard Ayoub.

Richard Ayoub, Derbeh Vance, a volunteer of 20 years and Chef John

Charity Matters: Tell us a little about what Project Angel Food does?

Richard Ayoub: Project Angel Food cooks and delivers over 12,000 nutritious meals each week, free of charge, to the homes of men, women and children affected by life-threatening illnesses. Our vital food and nutrition services, include medically tailored meals, help the underserved people throughout Los Angeles County who are too sick to shop or cook for themselves. We are referred by over 150 agencies and while we were created in response to the HIV/AIDS epidemic, we expanded our mission in 2004 to help our neighbors who are struggling with any life threatening illness burdened by hunger and malnutrition.

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

Richard Ayoud: I like to go out and deliver meals to our clients and hear from them. Many of them are very sick and are not super sociable but many of them are craving someone just to talk too. We were visiting with an HIV patient in his fifties and he looked at me and said, “Can I give you a hug?” This man was SO grateful for our work, for his meal, and he held me in the longest biggest hug to let me know just how much our work meant to him. The one universal thing we see with all of our clients is gratitude.

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

Richard Ayoub: I know I was meant to be here and it was a calling. I was in broadcast journalism , I was a newscaster and yet I always wanted to make a difference more than anything. I believe that I was put here to serve these people. They fuel me to keep going.

Charity Matters: Tell us what success you have had at Project Angel Food?

Richard Ayoub: Project Angel Food sometimes feels like LA’s best kept secret and people do not know how deep our commitment is to make made from scratch, healthy nutritious meals. Our favorite phone calls are when our clients call and say they are healthy and no longer need the meals, please give the food to someone else.

We have just entered into a pilot program with the state of California that is proving food is medicine, proving that we can keep people healthier and the results are amazing. We drive all 4,000 miles of LA County everyday. We believe in all forms of equity and we go the distance for our clients. In the last two and half years we have increased the people we feed by 30%. Our goal is always to feed more people. It costs us $2,000 to feed one person for a year. This year alone we will serve over 500,000 meals with over 4,700 volunteers.

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

Richard Ayoub: I think one of my biggest life lessons is to just believe and to turn it over. The theory of just believing truly works with everything in our lives. In this work, one day you have a grant that you are counting on to feed people and you do not receive it. You want to give up and then out of nowhere you receive unsolicited donations that are even more than the grant. We have a supporter here who calls that “Divine Choreography.” These miracles constantly happen in this work.

This journey feels like my calling and everything I have done prior to this moment has prepared me for this. I am doing something to make the world a better place, even in a small way. This journey with Project Angel Food has brought out the essence of who I am and simply amplified it.

Everyday I walk into this building, I am grateful that I can simply come to work. Our clients dream of going to work, they are home bound and often times forgotten.  They are often times the invisible people of LA and we want them to know we remember them. We want everyone to know that, “you are not alone.” I think it is a message that we all need to hear.

Charity Matters

 

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Cancer

The measure of a life

“There is not one big cosmic meaning for all; There is only the meaning we each give to our life, an individual meaning, an individual plot, like an individual novel, a book for each person.”

Anais Nin

Last week we lost a dear friend to cancer, someone we had known since college who was not even 50. Sadly this was not unexpected but losing a friend so young and so full of joy was and still is beyond difficult. It is moments like these that make us all stop in our tracks and hit the reset button to think about what is truly important? I found myself asking how am I  using my precious time and what really matters?

 

I came home from the service a bit numb, sad and depressed. I decided to read to try to take my mind off the days events. I began to read an article about Paul Allen, Microsoft’s co-founder who had also just passed away. The article in the Chronicle of Philanthropy talked about Paul Allen’s passion for life. It discussed his love of learning, of music, sports, exploring ideas and the world’s unknown. Paul Allen donated over 2.3 billion dollars in his lifetime and in addition to that he also took the Giving Pledge, vowing to donate more than half of his estate to charity.

When he took the giving pledge he had to write an essay and in it, he said, “My philanthropic strategy is informed by my enduring belief in the power of new ideas.  By dedicating resources that can help some of the world’s most creative thinkers accelerate discovery, I hope to serve as a catalyst for progress in large part, by encouraging closer collaboration and challenging conventional thinking. When smart people work together with vision and determination, there is little we can’t accomplish.”

Each life, whether our friends, Paul Allen’s or our own is ultimately only as good as the meaning we give it. We are the author, we have the pen and now to script that meaning, our individual plot, our novel, and our book. The meaning is for each of us to find and to live.

 

Charity Matters.

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Charity Matters Inspiration

The Clarity Project

 

Earlier this week I posted about losing legends, well it appears that on Monday, we lost another one. Her name was Claire Wineland and she was 21 years old. Claire was born with Cystic Fibrosis, a disease that creates an overabundance of mucus and ultimately results in respiratory failure. She grew up knowing that she was terminally ill and what we would think of as tragic, she simply used as fuel. Her message and life were truly remarkable.

Claire endured over 30 surgeries in her short 21 years and spent an incredible amount of time in the hospital. About six years ago, after being in a coma for over 20 days, flat-lining twice and being given a less than 1% of survival, Claire survived. She came out of the experience determined to help others with Cystic Fibrosis. From that near death experience began the creation of the Claire’s Place Foundation,whose mission is to relieve families financially with CF, to help with their rent, mortgage, car payments, etc.

The foundation became a way to celebrate Claire’s life. She once said,”It is important for people who are sick to feel empowered. It gives them a reason to take care of themselves.” And if that wasn’t enough, Claire decided shortly after in high school to begin a YouTube series called The Clarity Project, where she talks about topics such as how to talk to a sick person or even what it is like to live like you are dying.

Claire moved out on her own, decided not to go to college because she was not sure she would live long enough to graduate. She spent her time sharing her inspirational message doing Ted talks, running her foundation and recently partnered with Zappos to take on project similar to Once Upon a Room by decorating children’s hospital rooms in Las Vegas.

Claire’s message is a reminder to us all. If you give yourself one gift today, listen to Claire’s talk (above). She was a reminder to each of us how precious life is, how blessed we are to have our health and regardless of our circumstances, that someone always has less than we do.

Claire lived her life as an example to each of us. Even in her death her organs were donated to help over 50 people. In her last video Claire said, “Go enjoy your life. I mean really seriously, go enjoy it, cause there are people fighting like hell for it.” Claire’s legacy tells us that we not only have the power to help…. but more than that…..to live our lives fully.

Charity Matters.

 

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Alzheimers

There is nothing I enjoy more than connecting friends and colleagues, especially when there is a good cause involved. So a few weeks ago when I connected two remarkable women, one a fundraiser for USC and the other a well known wealth strategist for Northern Trust, I was thrilled when I received the invitation for an event on Alzheimers the two partnered to put together.

It was a fantastic morning conversation with  Dr. Helena Chang-Chui, a world renown researcher and a top Alzheimer specialist. She is the chair of the Keck School of Medicine of USC’s Department of Neurology and has authored over 182 publications on the topic and was fascinating to learn from, which is why I wanted to share.

Every 66 seconds, someone in the United States is diagnosed with Alzheimers and chances are each of us knows someone who has been affected by this devastating disease. We learned that Alzheimers disease is the 6th leading cause of death in the United States and according to the Alzheimer’s Association there are currently about 5.5 million people currently living with the disease. Without successful treatments that number is projected to rise to about 13.5 million by 2050! The longer people live, the more Alzheimer’s disease there will be.

So that’s the bad news. Here is the good news:

The National Institute of Health recently allocated $1.3 billion to Alzheimer’s disease research which was $884 million more than ever before! Now the top researchers in the country Harvard, the Mayo Clinic and USC Alzheimer’s Therapeutic Research Institute will be working together with some of this funding to find a cure. In the meantime, Dr. Chui shared with us a few things we can all do to protect our mental health.

  1. Diet– A Mediterranean diet based on nuts, fruits, vegetables, whole grains, fish, olive oil, coffee and coconut oil has all proven to activate the brain’s metabolic function and may prevent or slow the onset of Alzheimers disease.
  2. Exercise– The brain’s processing speed can begin to slow down as early as 25 but exercise bulks up existing neurons and improves communication between brain cells. The Doctor said it is like a bank account where what you do now strengthens cognitive resilience later.
  3. Quality Sleep- Six to eight hours of sleep for adults is critical so that toxic proteins that are implicated in Alzheimers disease are flushed out during sleep. It is the bodies time of rebooting and sleep gives the body time to restore.
  4. Connect with Others-Relationships are good for the brain and the heart and current research suggest that there is a connection between social interaction and brain health. Being social connects neurons and activities with friends can give the brain added benefits.
  5. Managing Stress-High stress encourages behaviors such as poor eating habits, isolation, or decreased exercise all which increase the risk of dementia which could lead to changes in the brain.

The take away from this fantastic conversation with Dr. Chang-Chui was that we all need to proactive with our health and that includes our mental health as well. We can all take steps today to make tomorrow better for ourselves and our loved ones.

charity matters.

 

 

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Cancer

The Foundation for Living Beauty

Have you ever seen someone walk into a room that radiates a bright light? That is exactly the impact that Amie Satchu has when she enters the room. It isn’t her physical beauty (which she has) but something bigger within that catches you immediately. When we met through a mutual friend recently at a lunch, I was not surprised to discover that she had founded a nonprofit, most appropriately called The Foundation for Living Beauty.

Amie and I had a chance to catch up earlier this week to discuss her inspirational journey and mission to provide women with cancer emotional, physical and spiritual support throughout their cancer treatment. The Foundation for Living Beauty uses a holistic approach to educate, uplift and empower women dealing with cancer whether newly diagnosed, in mid treatment or beyond.

Charity Matters: What was the moment you knew you needed to act and start your non-profit?

Amie Satchu: In my early 20’s I started  a hair care line that specialized in wigs and hair extensions, that quickly gained notoriety in the ethnic hair care market. With that came hundreds of letters from women telling us that we had transformed their beauty by transforming their hair, many of whom had cancer. So, as a result of those letters I decided to start a nonprofit in 2005 to serve  these women.

The week after we received our 501c3 nonprofit status, my mother was diagnosed with Multiple Myeloma, a terminal cancer and given less than two years to live. I crawled into my mom’s hospital bed and told her we were going to get through this together. The Foundation for Living Beauty truly came out of providing her with a quality of life and each program was built out of her experience.

A few weeks later my mom (who was a social worker) and her two best friends were also diagnosed with cancer. The connection between these three women, the sisterhood and coming together truly formed the inspiration for the women we serve to find a place where they can thrive and heal.

charity Matters: Tell us a little about your work?

Amie Satchu: The Foundation for Living Beauty does over 30 events a year all 100% free to support women with cancer. We do wellness workshops, yoga for cancer patients and sisterhood support events. All of the support services we currently offer, address the complex needs my mother faces along her cancer journey and help women understand that the lifestyle choices they make can help them feel and live better.

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

Amie Satchu: My mother died four years ago and she lived eight amazing years after her diagnosis. I saw her emotional wellness after our events, seeing the impact of our work first hand. My mom is still the guiding light even though she is no longer physically with us. I see the impact from the women we serve, in their renewed sense of hope and well being, and that in turn supports their families through this journey. 

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

Amie Satchu: There are so many moments and people that remind me of the difference we have made in hundreds of peoples’ lives. One person that stands out to me is Sandra Yates Thompson (who is in the video below), we were not only able to help her through her battle but to support her and her family in ways that shifted her and all of us. Her heart was so beautiful and it is people like Sandra that inspire us to keep going.

Each life we touch reminds me of the importance of our work. We had a client named Cassandra who was a single mother, and an attorney who was such an inspiration that we had a donor create a Cassandra fund to help single mother’s with cancer.

Charity Matters: Tell us what success you have had? What has your impact been? Number  of people impacted, funds raised?

Amie Satchu: Our success is truly about each life we touch, whether the woman with cancer or her family. We currently serve 650 Living Beauties that are a part of our program. These women can attend over 30 events for free that focus on increasing their physical wellness and emotional stability while coping with cancer. 97% of our participants gain a new understanding of their body and immune system and 92% of the women we serve agree that they have more tools to strengthen and heal their body because of our program.

Amie with Olivia Fox, who was diagnosed with cancer in her early 20s
charity Matters: How has this journey changed you?  What life lessons have you learned from this experience?

Amie Satchu: This journey has changed me in so many ways. The exchange between the women we serve reminds me to live only in the present. Bringing hope into others lives, learning to be open and to make everyday count are invaluable experiences that have changed me. When I do those things I feel my mother’s presence and know this is where I want to be.

The life lesson I have taken from this journey is that what really matters in this lifetime are the connections you have with other souls. The positive things you do in this life are the only things you take with you and the only things that are truly important. Being with my mom at the end of her life for her last breath is a daily reminder that love is all that we have and all that matters.

charity matters.

 

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Charity Matters Inspiration

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!”

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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.

 

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February is all about heart….

It is February and National Heart Month, tomorrow is Valentine’s Day and for next 48 hours the world will be full of hearts, candy, paper and real ones. This is the time of year when we think about love and what our hearts do and it is also a time to take a pause and think about what happens when our hearts are broken?

One out of 110 children will be born this year with congenital heart disease, over 40,000 children. What does that look like for those families? Over the years I have met a number of these resilient, brave and courageous parents and each one inspires me with their passion and commitment to their child. Their journeys are extraordinary and as a result so are these miraculous children who come through this, like dear Max Page we discussed  last week.

On Thursday, we will meet Lisa Knight, a pediatric nurse who has been working with thousands of these amazing children. Her story and nonprofit will melt your heart. Until then, feel that beating heart of yours, be grateful for your health, all of the love in your life and be sure to share the love wherever you can. The world will be better today because of you.

Charity Matters.

 

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Max: A Force for Goodness

 

All of you who have been reading Charity Matters for the past few years know that Max Page  and his family have become dear friends to Charity Matters. You may remember Max as Little Darth Vadar of the infamous Super Bowl commercial a few years back or from a number of posts we have done featuring his incredible philanthropic work over the years.

I met Max and the Page family through our mutual work at Childrens Hospital Los Angeles, where Max has spent a lot of time over the years. Max was born with a congenital heart defect and over the course of the last 13 years has had 12 surgeries. This past week Max went through yet another surgery on his heart,his 13th,  to replace a valve that his body has outgrown. Each year over 40,000 are born with congenital heart disease.

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.

Max as always uses his experience to make others lives better, even at the tender age of 13. 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 recently said in an interview with Today, “I’m going to do whatever I can to help and do the best to bring awareness to kids like me.”  Max you already have and we are cheering you on during your recovery.

Charity Matters.

 

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